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INTRODUCTION

Thank you for visiting our Websites and Platforms and reviewing our Privacy Policy, as well as our personal information and privacy practices.

The World Federation of Hemophilia (hereinafter "the WFH" or "WFH") recognizes that privacy is everyone's business and takes the confidentiality and security of your personal information very seriously. For this reason, we have taken steps to ensure that any personal information we collect about you is protected by a range of rigorous procedures and security measures to ensure that your information is kept confidential and used only for the purposes detailed in this Policy, unless otherwise authorized by law.

WFH is committed to protecting the privacy of all individuals about whom it collects personal information. To this end, this policy aims to establish responsible and transparent practices for the management of personal information, and to meet the requirements of the rules established by the Act Respecting the Protection of Personal Information in the Private Sector ("ARPPIPS", CQLR c. P-39.1) and the Personal Information Protection and Electronic Documents Act ("PIPEDA", S.C. 2000, c. 5) (hereinafter the "Acts"). WFH is also subject to the provisions of the European General Data Protection Regulation ("GDPR").

1. PURPOSE

2. SCOPE

3. DEFINITION OF "PERSONAL INFORMATION"

4. RESPONSIBILITIES OF WFH

5. HOW DO WE COLLECT YOUR CONSENT?

6. WHY WE COLLECT PERSONAL INFORMATION

7. WHAT PERSONAL INFORMATION DO WE COLLECT?

8. USE OF COOKIES

9. RESPONSE TO JOB OFFERS

10. PROTECTION OF THE PRIVACY OF MINORS

11. DO WE DISCLOSE YOUR PERSONAL INFORMATION TO THIRD PARTIES?

12. SHARING PERSONAL INFORMATION OUTSIDE QUÉBEC

13. HOW DO WE PROTECT YOUR PERSONAL INFORMATION?

14. RETENTION AND DESTRUCTION OF PERSONAL INFORMATION

15. ACCESSING, CORRECTING, DE-INDEXING AND PORTABILITY OF YOUR PERSONAL INFORMATION

16. WITHDRAWING YOUR CONSENT

17. CHANGES TO OUR PRIVACY POLICY

18. CONTACT DETAILS FOR THE PRIVACY OFFICER

APPENDIX A

1.	PURPOSE
1.1	This WFH Digital Platforms Privacy Policy (hereinafter "Policy" or "Privacy Policy") explains not only how we collect, use, disclose and store any information related to your personal data when you visit any Website (or "Websites") or mobile applications ("Applications" or "Platforms") operated by WFH, but also how you can access, update or take control of your personal information.
1.2	This Policy replaces and updates the WFH Website Privacy Policy (IT 003).

1. PURPOSE

1.1 This WFH Digital Platforms Privacy Policy (hereinafter "Policy" or "Privacy Policy") explains not only how we collect, use, disclose and store any information related to your personal data when you visit any Website (or "Websites") or mobile applications ("Applications" or "Platforms") operated by WFH, but also how you can access, update or take control of your personal information.

1.2 This Policy replaces and updates the WFH Website Privacy Policy (IT 003).

2.	SCOPE
2.1	This Policy generally applies to: any personal information of a factual or subjective nature about an identifiable individual collected through the Websites and/or Platforms on which this Policy is posted, or through any other interactions you may have with us; WFH staff members (regular employees, temporary employees and contractual resources) and senior management who handle personal information held by WFH; visitors to our Websites and/or Platforms, our volunteers and Board members, and any person or company acting for or on behalf of WFH.
2.2	External links. This Policy does not apply to links to third-party websites, plug-ins, services, social networks or applications, including those offered via hyperlinks displayed on our Websites and/or Platforms. If you follow a link to a third-party website or use a third-party plug-in, please note that these third parties have their own privacy policies and we do not accept any responsibility or liability for those policies. We do not control these third-party websites and encourage you to read the privacy policy of each site you visit before providing them with any personal information.

5.	HOW DO WE COLLECT YOUR CONSENT?
5.1	The WFH considers you to have validly consented to the collection, use or disclosure of your personal information if (i) you give your express written or oral consent; (ii) you voluntarily provide personal information for an obvious purpose; or (iii) if you do not object to the collection, use or disclosure of personal information by the WFH within a reasonable time after the WFH has given you clear notice, including through this Policy, of its intention to do so and the intended purposes.
5.2	In some cases, the WFH may collect personal information about an individual without their consent in accordance with the Acts or any other law or regulation that permits doing so.

10.	PROTECTION OF THE PRIVACY OF MINORS
10.1	WFH does not knowingly collect personal information from children under the age of 14 without the consent of the child's parent or legal guardian. If we learn that we have collected or received personal information from a child for whom parental confirmation was required, we will delete that information. If you believe that we may have received information from or about a child for whom we should have obtained parental consent, please contact us.

12.	SHARING PERSONAL INFORMATION OUTSIDE QUÉBEC
12.1	Your personal information is processed and stored in Québec. In order to carry out our mission, we may in some cases store, process and transfer your information around the world, including outside Québec or to jurisdictions outside your country of residence — if you are located in the Economic European Area or Switzerland, please review Appendix A "Additional terms" which apply to you in addition to the main terms of this Policy. Data may also be stored locally on the devices you use to access WFH Websites and/or Platforms.
12.2	In such cases, the transfer will only take place if we find that the information would be adequately protected, in particular considering the sensitivity of the information, the purpose for which it is used, the protection the information would be afforded, and the legal framework applicable in the state or province where the information would be transferred. Any transfer will also be subject to appropriate contractual agreements to ensure adequate protection.

17.	CHANGES TO OUR PRIVACY POLICY
17.1	WFH will review and update its policies and procedures as required to keep current with rules and regulations, new technologies and standards. Our Privacy Policy may therefore change from time to time. We will post any Policy changes on our Websites and Platforms and, if the changes are significant, we will provide a more prominent notice. You are responsible for periodically visiting our Websites and/or Platforms and this Policy to check for any changes.
17.2	Please note that both the English and French versions of our Privacy Policy have equal legal value.

18.	CONTACT DETAILS FOR THE PRIVACY OFFICER
If you have any comments, questions or requests regarding this Policy or our privacy practices, or to report any abuse by third parties, please do not hesitate to contact Antonio José Almeida, WFH Senior Director, Operations and Privacy Officer by e-mail at [email protected] or at the following postal address:
c/o Privacy Officer, World Federation of Hemophilia 1425, boul. René-Lévesque West Suite 1200 Montreal, Québec H3G 1T7 Canada
We have procedures in place to receive and respond to complaints or inquiries about our handling of personal information, our compliance with this Policy and applicable privacy laws. If you are not satisfied with WFH's handling of your personal information, you may file a complaint with WFH. The complaint will be investigated by the WFH Privacy Officer, who will determine whether the handling of the information complies with WFH policies and practices and any other applicable laws. The Privacy Officer will make every reasonable effort to resolve complaints. The person filing the complaint will be informed of any progress or outcome of the investigation within a maximum of 30 working days of receipt of the request and/or any additional time required to complete the investigation.

APPENDIX A
ADDITIONAL TERMS FOR USERS LOCATED IN THE ECONOMIC EUROPEAN AREA (EEA) AND SWITZERLAND
If you are located in the European Economic Area (EEA) or Switzerland, these additional terms apply to you in addition to the main terms of WFH Privacy Policy. In case of a contradiction between the Privacy Policy and these additional terms, the latter will prevail.
1	LEGAL BASIS FOR PROCESSING PERSONAL INFORMATION UNDER THE GENERAL DATA PROTECTION REGULATION (GDPR)
1.1	If you are from the European Economic Area (EEA) or Switzerland, WFH’s legal basis for collecting and using the personal information described in this Privacy Policy depends on the personal information we collect and the specific context in which we collect it. We only process your Personal information if we have a legal basis to do so, which includes: Consent: where you have given us your consent, you have given us permission to do so, or where processing is necessary for the performance of a service you have requested; or Legitimate interests: for example, we may process your personal information to protect you, us, or others from threats (such as security threats or fraud), to comply with laws that apply to us.
If you have any questions about the lawful bases upon which we collect and use your personal data, please contact: Antonio José Almeida, WFH Senior Director, Operations and Privacy Officer by e-mail at [email protected] or at the following postal address: c/o Privacy Officer, World Federation of Hemophilia, 1425, boul. René-Lévesque, West Suite 1200, Montreal, Québec, H3G 1T7, Canada
2	TRANSFER OF YOUR PERSONAL INFORMATION OUTSIDE OF THE EEA OR SWITZERLAND
2.1	We may process information outside of the EEA or Switzerland, including Canada and the USA.
3	ADDITIONAL RIGHTS REGARDING YOUR PERSONAL INFORMATION UNDER THE GENERAL DATA PROTECTION REGULATION (GDPR)
3.1	If you are a resident of the European Economic Area (EEA) or Switzerland, you have certain data protection rights. WFH aims to take reasonable steps to allow you to correct, amend, delete or limit the use of your personal information.
3.2	If you wish to be informed about what personal information we hold about you and if you want it to be removed from our systems, please contact us.
3.3	In addition to the rights mentioned in the section 15 ("Accessing, correcting, de-indexing and portability of your personal information") and in section 16 ("Withdrawing your consent"), in certain circumstances, you also have the following data protection right: The right to delete the information we have on you. Whenever made possible, you can request deletion of your personal information, in which case we will carry out this request unless certain exceptional reasons arise permitting us to keep certain information about you; The right to object. You have the right to object to our processing of your personal information in certain circumstances, such as those described in the “Legitimate interests” section 1.1 b) above. We may however continue to process your personal Information unless your interests, rights and freedoms override our legitimate interests; and The right of restriction. You have the right to request that we restrict or limit the ways in which we process your personal information for instance where you believe your data is inaccurate. Please note that we may ask you to verify your identity before responding to such requests.

1. PURPOSE

1.2 This Policy replaces and updates the WFH Website Privacy Policy (IT 003).

2. SCOPE

2.1

This Policy generally applies to:

any personal information of a factual or subjective nature about an identifiable individual collected through the Websites and/or Platforms on which this Policy is posted, or through any other interactions you may have with us;
WFH staff members (regular employees, temporary employees and contractual resources) and senior management who handle personal information held by WFH;
visitors to our Websites and/or Platforms, our volunteers and Board members, and any person or company acting for or on behalf of WFH.

2.2 External links. This Policy does not apply to links to third-party websites, plug-ins, services, social networks or applications, including those offered via hyperlinks displayed on our Websites and/or Platforms. If you follow a link to a third-party website or use a third-party plug-in, please note that these third parties have their own privacy policies and we do not accept any responsibility or liability for those policies. We do not control these third-party websites and encourage you to read the privacy policy of each site you visit before providing them with any personal information.

3. DEFINITION OF "PERSONAL INFORMATION"

3.1	When used in this Privacy Policy, “personal information” means any information about an individual that can be used to identify an individual, including, but not limited to, your name, address, email address, telephone number, gender, banking details, employment, health or other information.

4. RESPONSIBILITIES OF WFH

4.1	The WFH will fulfill all requirements to protect, collect, use, disclose and retain personal information under the Acts and all other applicable laws and regulations. We attach great importance to the proper management of your data and take full responsibility for it.
4.2	The WFH will also ensure that it has reasonable security measures in place to protect and respect the confidentiality of any personal information in its custody and control.

5. HOW DO WE COLLECT YOUR CONSENT?

5.1 The WFH considers you to have validly consented to the collection, use or disclosure of your personal information if (i) you give your express written or oral consent; (ii) you voluntarily provide personal information for an obvious purpose; or (iii) if you do not object to the collection, use or disclosure of personal information by the WFH within a reasonable time after the WFH has given you clear notice, including through this Policy, of its intention to do so and the intended purposes.

5.2 In some cases, the WFH may collect personal information about an individual without their consent in accordance with the Acts or any other law or regulation that permits doing so.

6. WHY WE COLLECT PERSONAL INFORMATION

6.1	We strongly believe in both minimizing the information we collect and limiting its use and purpose. WFH uses your personal information only for the purposes and for the duration required for which it was collected, or for any use that may be required or permitted by legal compliance, government request, court order or other lawful purpose.
6.2	We collect personal information for a variety of reasons. In general, WFH collects only the personal information necessary to fulfill its mission. We may also collect information for administrative purposes — to better understand the visitors who come to our websites and/or Platforms and the content of our websites and/or Platforms that is of interest to them. The purposes for which we collect personal information include, but are not limited to: Improve the content, offering, appearance and usefulness of our Websites and/or Platforms; Send, subject to your right to withdraw your consent as set out in this Policy, periodic emails; Personalize your experience by responding to your needs; Provide you with information or resources you have requested; Process a donation and issue tax receipts; Meet legal and regulatory requirements; Prevent potentially prohibited or illegal activities for risk management, fraud detection and security purposes.
6.3	Wherever possible, rather than using personal information, we will anonymize and/or aggregate personal information so that it no longer identifies an individual and use it for the purposes stated above or for any purpose permitted by law.
6.4	If we ever wish to use or disclose your personal information for purposes other than those specifically described in this Policy, we will obtain your consent.

7. WHAT PERSONAL INFORMATION DO WE COLLECT?

7.1	WFH only collects personal information that is directly related to one of our programs or activities. We take steps to ensure that the personal information we collect about you is adequate, relevant, not excessive and used for limited purposes. We collect only the information we need.
7.2	The WFH collects information on its Websites and/or Platforms in two ways:
7.2.1	Information you provide directly to us: In many cases, we collect personal information directly from you when you provide your information by subscribing to our Newsletter, when you fill out other forms on our Websites and/or Platforms, when you make an inquiry or when you contact us in person or through the WFH Websites and/or Platforms. The provision of this information is strictly voluntary. We strongly encourage you not to provide any information beyond what is necessary.
7.2.2	Information collected automatically: You should be aware that when you access or browse our Websites and/or Platforms, an exchange of information, subject to your prior consent, takes place automatically between your device and WFH's hosting environment. This exchange is required only because of the technological demands inherent in Internet browsing and is used for statistical purposes to improve your experience — the information exchanged does not identify you personally. The information exchanged is as follow: The domain name of your internet service provider; Your computer's truncated IP address (your IP address is changed, making it impossible to link to you); The type of browser (Chrome, Edge, Firefox, Safari, etc.) and operating system (Windows, Mac OS, etc.) used; The date and time of your visit; The pages you consult and the duration of these consultations; The address of the referring site, if you access WFH Websites and Platforms from another site. WFH retains only the information necessary to count the number of visitors, the most frequently visited pages, the technology used by visitors, the referring sites and the country of origin of visitors. This information is not used in any way to compile, communicate or exchange lists of users/visitors.
7.3	By using the WFH Websites and/or Platforms, you agree to the terms and conditions set forth in this Privacy Policy.

8. USE OF COOKIES

8.1	The main types of data collected on WFH Websites and/or Platforms are cookies and personalization settings. Cookies are small text files that are downloaded when you visit certain pages of a site and stored in the memory of the device you are using. Cookies are completely harmless and cannot contain any viruses. They enable certain information (browser type, language, country, identifier, etc.) to be recorded and retrieved by the server on subsequent visits. Under no circumstances do cookies allow visitors to be identified. The data remains completely anonymous and is used only to facilitate browsing and improve the WFH’s Websites and/or Platforms based on the needs of its visitors.
8.2	If you do not wish cookies to be used, your browser options can be configured to refuse and/or delete cookies. Please note that disabling or deleting cookies may deprive you of certain functions offered on our Websites and/or Platforms. In addition, this procedure must be repeated for each browser and computer used.
8.3	Google Analytics. We also gather information automatically about visits to our Websites and/or Platforms to help us maintain and improve its design, and to evaluate traffic statistics, such as the times of day and days of week at which we see peak traffic, and to assess the relative popularity of different areas of the Websites and/or Platforms. We use Google Analytics to gather this data and analyze it. Google Analytics collects information about the date and time in which our Websites and/or Platforms were accessed, and may also track a visitor’s movement within the site, but does not collect personal information about the visitor. You can install the Google Analytics Opt-out Browser Add-on to prevent information about your visits to our Websites and/or Platforms being sent to Google Analytics. Our web statistics software (Google Analytics) collects information about the date and time in which our Websites and/or Platforms were accessed, and we may also track a user’s movement within the Websites and/or Platforms. We use this data to improve our Websites and/or Platforms performance.
8.4	Meta Pixel. WFH also uses web beacons (“Pixels”) to analyze visitor activity to our Websites and/or Platforms. We use Meta Pixel to collect information about your interactions with our Websites and/or Platforms, such as pages visited, actions taken, buttons clicked and any pages visited as a result of the button clicks. Web beacons do not contain any personal information but may contain a unique identifier necessary for retargeting and targeted advertising. Meta Pixel allows us to measure the effectiveness of our advertising by understanding the actions you take on our Websites and/or Platforms. We use this data solely for analytical purposes to improve our services and deliver more relevant content.

9. RESPONSE TO JOB OFFERS

9.1	If you have applied for a job with WFH, we will use your personal information for recruitment and other human resources purposes. We keep the documents sent (CV, cover letter, etc.) by the candidates for a maximum of three (3) years. Documents are then securely destroyed.

10. PROTECTION OF THE PRIVACY OF MINORS

10.1 WFH does not knowingly collect personal information from children under the age of 14 without the consent of the child's parent or legal guardian. If we learn that we have collected or received personal information from a child for whom parental confirmation was required, we will delete that information. If you believe that we may have received information from or about a child for whom we should have obtained parental consent, please contact us.

11. DO WE DISCLOSE YOUR PERSONAL INFORMATION TO THIRD PARTIES?

11.1	Rest assured that WFH will never sell, trade, rent, share or transfer your personal information to third parties (organizations or individuals) for commercial purposes without your consent, except in the exceptional cases specifically provided for in this Policy.
11.2	As part of the services offered by our external suppliers. WFH may transfer personal information that we collect or that you provide as described in this Policy to service providers and other third parties we use to support our organization. Such third parties are contractually obligated to keep personal information confidential, use it only for the purposes for which we disclose it and process personal information in accordance with the standards set out in this Policy and in compliance with the Acts.
11.3	In the context of a legal obligation. WFH may disclose your personal information to comply with any court order, law or legal process, including to respond to any government or regulatory request, in accordance with applicable law, to combat fraud or harms to WFH or our members, or if we believe that disclosure is necessary or appropriate to protect the rights, property or safety of WFH or others.

12. SHARING PERSONAL INFORMATION OUTSIDE QUÉBEC

12.1 Your personal information is processed and stored in Québec. In order to carry out our mission, we may in some cases store, process and transfer your information around the world, including outside Québec or to jurisdictions outside your country of residence — if you are located in the Economic European Area or Switzerland, please review Appendix A "Additional terms" which apply to you in addition to the main terms of this Policy. Data may also be stored locally on the devices you use to access WFH Websites and/or Platforms.

12.2 In such cases, the transfer will only take place if we find that the information would be adequately protected, in particular considering the sensitivity of the information, the purpose for which it is used, the protection the information would be afforded, and the legal framework applicable in the state or province where the information would be transferred. Any transfer will also be subject to appropriate contractual agreements to ensure adequate protection.

13. HOW DO WE PROTECT YOUR PERSONAL INFORMATION?

13.1	The security of your personal information is very important to us. The personal information we collect is stored in a secure environment using industry-recognized technologies. We will protect personal information against loss or theft, unauthorized access, use or disclosure, copying, modification or destruction.
13.2	When you visit our Websites and/or Platforms and are asked for personal information, this information is used exclusively by WFH. In order to protect your personal information, we have implemented customary security measures that are appropriate to the sensitivity of the information collected, including the following physical, organizational, contractual and technological measures: Information stored in a protected database; Encrypted communications using the TLS protocol; Access to your personal information is restricted to those employees who need it to perform their duties (authorized and/or concerned persons) — these employees will treat the information as strictly confidential and will not give access to this information to any unauthorized person; Report any violation of this Policy or the Acts to the WFH Privacy Officer; Network monitoring software; Anti-virus and anti-malware; End-user device encryptions; Passwords and multi-factor authentication; Firewall; Secure Web site donation page; content encrypted or encoded to make information unreadable; Paper files kept in locked filing cabinets wherever possible; Access codes to WFH premises; Security personnel.
13.3	Individuals working for WFH or acting on our behalf must make reasonable efforts to minimize the risk of unintentional disclosure of personal information. In addition, our policies, procedures and codes of conduct are clearly communicated to our employees, contractors, volunteers, consultants and subcontractors and WFH will ensure that they are adhered to and respected. All individuals who fail to comply with the principles and procedures of this Policy will be subject to corrective measures, including termination of their employment relationship, tenure or contract.
13.4	Despite these precautions, no method of transmission or storage is 100% secure or error-free. As a result, we cannot guarantee absolute security. If you have reason to believe that your interaction with us is no longer secure, please contact us immediately.
13.5	If we become aware of a security breach involving your personal information, we will notify you and the appropriate authorities as soon as possible, in accordance with the Acts.

14. RETENTION AND DESTRUCTION OF PERSONAL INFORMATION

14.1	Except as permitted or required by the Acts or any applicable law or regulation, WFH will retain your personal information only for as long as necessary to fulfill the purposes for which we collected it, including for the purposes of satisfying legal, accounting or reporting requirements to the appropriate government and regulatory bodies.
14.2	Personal information that is no longer required for the purposes for which it was collected will be destroyed, erased or made anonymous in accordance with applicable laws.
14.3	Under some circumstances, we may anonymize your personal information so that it can no longer be associated with you. We reserve the right to use de-identified and anonymized data for any legitimate purpose without further notice to you or your consent.
14.4	If the WFH uses personal information to make a decision that directly affects an individual, we will retain that information for as long as necessary to fulfill the purposes for which the information was collected. Once the information has been used, individuals may access their personal information as set out in the Acts.

15. ACCESSING, CORRECTING, DE-INDEXING AND PORTABILITY OF YOUR PERSONAL INFORMATION

15.1	It is important that the personal information we hold about you is accurate and current. Please keep us informed if your personal information changes. You can contact us via the WFH Online Contact Form or email us at [email protected].
15.2	Upon request, an individual is entitled to be informed of the existence, use and disclosure of their personal information and to obtain access to that information, or to obtain a copy of their personal information in electronic or non-electronic format subject to appropriate notice. An individual has the right to challenge the accuracy and completeness of their personal information, have it amended, or withdraw consent to the use of their information. In addition, WFH complies with all laws regarding access to and correction of your personal information.
15.3	An individual has also the right to receive computerized personal information collected from them in a structured, machine-readable, and commonly used format. In certain circumstances, the individual may also ask WFH to transfer their computerized personal information directly to third parties. An individual has the right to request that the dissemination of their personal information cease, or to request that any hyperlinks associated with their name and that provide access to personal information be de-indexed or re-indexed.
15.4	No request for access, rectification, de-indexation or data portability may be considered unless it is made in writing and addressed to the WFH Privacy Officer. You must provide enough detail to enable the WFH to process the request. The Privacy Officer will respond within 30 days of the receipt of a request, unless it extends the time as authorized under the Acts.

16. WITHDRAWING YOUR CONSENT

16.1	If you have given your consent to the collection, use and transfer of your personal information, you may have the legal right to withdraw your consent under certain circumstances. To withdraw your consent, if applicable, contact us at [email protected].
16.2	Please note that if you withdraw your consent, we may not be able to provide you with certain services. We will explain the impact of withdrawing your consent to help you make a decision.

17. CHANGES TO OUR PRIVACY POLICY

17.1 WFH will review and update its policies and procedures as required to keep current with rules and regulations, new technologies and standards. Our Privacy Policy may therefore change from time to time. We will post any Policy changes on our Websites and Platforms and, if the changes are significant, we will provide a more prominent notice. You are responsible for periodically visiting our Websites and/or Platforms and this Policy to check for any changes.

17.2 Please note that both the English and French versions of our Privacy Policy have equal legal value.

18. CONTACT DETAILS FOR THE PRIVACY OFFICER

If you have any comments, questions or requests regarding this Policy or our privacy practices, or to report any abuse by third parties, please do not hesitate to contact Antonio José Almeida, WFH Senior Director, Operations and Privacy Officer by e-mail at [email protected] or at the following postal address:
c/o Privacy Officer, World Federation of Hemophilia 1425, boul. René-Lévesque West Suite 1200 Montreal, Québec H3G 1T7 Canada
We have procedures in place to receive and respond to complaints or inquiries about our handling of personal information, our compliance with this Policy and applicable privacy laws. If you are not satisfied with WFH's handling of your personal information, you may file a complaint with WFH. The complaint will be investigated by the WFH Privacy Officer, who will determine whether the handling of the information complies with WFH policies and practices and any other applicable laws. The Privacy Officer will make every reasonable effort to resolve complaints. The person filing the complaint will be informed of any progress or outcome of the investigation within a maximum of 30 working days of receipt of the request and/or any additional time required to complete the investigation.

APPENDIX A

APPENDIX A
ADDITIONAL TERMS FOR USERS LOCATED IN THE ECONOMIC EUROPEAN AREA (EEA) AND SWITZERLAND
If you are located in the European Economic Area (EEA) or Switzerland, these additional terms apply to you in addition to the main terms of WFH Privacy Policy. In case of a contradiction between the Privacy Policy and these additional terms, the latter will prevail.
1	LEGAL BASIS FOR PROCESSING PERSONAL INFORMATION UNDER THE GENERAL DATA PROTECTION REGULATION (GDPR)
1.1	If you are from the European Economic Area (EEA) or Switzerland, WFH’s legal basis for collecting and using the personal information described in this Privacy Policy depends on the personal information we collect and the specific context in which we collect it. We only process your Personal information if we have a legal basis to do so, which includes: Consent: where you have given us your consent, you have given us permission to do so, or where processing is necessary for the performance of a service you have requested; or Legitimate interests: for example, we may process your personal information to protect you, us, or others from threats (such as security threats or fraud), to comply with laws that apply to us.
If you have any questions about the lawful bases upon which we collect and use your personal data, please contact: Antonio José Almeida, WFH Senior Director, Operations and Privacy Officer by e-mail at [email protected] or at the following postal address: c/o Privacy Officer, World Federation of Hemophilia, 1425, boul. René-Lévesque, West Suite 1200, Montreal, Québec, H3G 1T7, Canada
2	TRANSFER OF YOUR PERSONAL INFORMATION OUTSIDE OF THE EEA OR SWITZERLAND
2.1	We may process information outside of the EEA or Switzerland, including Canada and the USA.
3	ADDITIONAL RIGHTS REGARDING YOUR PERSONAL INFORMATION UNDER THE GENERAL DATA PROTECTION REGULATION (GDPR)
3.1	If you are a resident of the European Economic Area (EEA) or Switzerland, you have certain data protection rights. WFH aims to take reasonable steps to allow you to correct, amend, delete or limit the use of your personal information.
3.2	If you wish to be informed about what personal information we hold about you and if you want it to be removed from our systems, please contact us.
3.3	In addition to the rights mentioned in the section 15 ("Accessing, correcting, de-indexing and portability of your personal information") and in section 16 ("Withdrawing your consent"), in certain circumstances, you also have the following data protection right: The right to delete the information we have on you. Whenever made possible, you can request deletion of your personal information, in which case we will carry out this request unless certain exceptional reasons arise permitting us to keep certain information about you; The right to object. You have the right to object to our processing of your personal information in certain circumstances, such as those described in the “Legitimate interests” section 1.1 b) above. We may however continue to process your personal Information unless your interests, rights and freedoms override our legitimate interests; and The right of restriction. You have the right to request that we restrict or limit the ways in which we process your personal information for instance where you believe your data is inaccurate. Please note that we may ask you to verify your identity before responding to such requests.

The use of all websites and Platforms belonging to the World Federation of Hemophilia (WFH) is subject to the following terms and conditions:

By using these websites and/or Platforms, you agree to its terms and conditions, effective as of the date you first use these websites and/or Platforms.
The World Federation of Hemophilia reserves the right to change these terms and conditions at any time by posting a modification notice online. Continued use of these websites and/or Platforms following the posting of changes constitutes your acceptance of these terms, as modified.
You agree to use these websites and/or Platforms only for lawful purposes and in a manner that does not infringe the rights of third parties or restrict or impede their enjoyment of use of this site.
These websites and/or Platforms and the information contained therein, names, images, photographs, and logos concerning or making reference to the World Federation of Hemophilia are provided “as is” without any additional representation or condition and without any implicit or explicit guarantee of any sort. Under no circumstance will the World Federation of Hemophilia be responsible for any damages, including, but not limited to, indirect damages, or any other damages caused by the use of or related to the loss of use of the websites and/or Platforms, whether by contract or negligence.
The World Federation of Hemophilia does not guarantee the site’s operations will not be interrupted and/or are exempt from error, or shortcomings will be corrected.
The World Federation of Hemophilia does not guarantee that the websites and/or Platforms or server will be free of viruses or bugs, or even its full functionality or the precision and exactness of its content.
Copyright restrictions:
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Cumbre 2023 de la FMH sobre atención integral: Nuevos avances en trastornos de la coagulación y temas musculoesqueléticos (MSK)

La Cumbre 2023 de la FMH sobre atención integral: Nuevos avances en trastornos de la coagulación y temas musculoesqueléticos (MSK) tendrá lugar del 10 al 12 de mayo de 2023, en Buenos Aires, Argentina. La Cumbre mundial abarcará el congreso internacional bienal de la FMH sobre temas musculoesqueléticos (MSK) e incluirá segmentos multidisciplinarios, médicos y sobre temas MSK, todos centrados en torno a personas con trastornos de la coagulación. La Cumbre sobre atención integral reunirá a profesionales médicos y del campo MSK, así como a pacientes con trastornos de la coagulación y defensores de la comunidad para abordar nuevas investigaciones y descubrimientos médicos, así como para valorar problemas y cuestiones presentes en el tratamiento de los trastornos de la coagulación en todo el mundo. Esta cumbre está abierta internacionalmente a todos los participantes.

También disponible en: English Français Español

–

Cumbre 2023 de la FMH sobre atención integral [email protected]

INFORMACIÓN PARA LA INSCRIPCIÓN

La inscripción y las reservas de alojamiento para la Cumbre mundial 2023 de la FMH sobre atención integral ya están abiertas para todos. ¡Aproveche nuestros descuentos de inscripción temprana e inscríbase antes del 16 de diciembre de 2022 para ahorrar!

La manera más segura de inscribirse es utilizar nuestro sencillo, eficaz y seguro sistema en línea. Simplemente complete los siguientes pasos para inscribirse en línea y recibirá un correo electrónico de confirmación dentro de las 24 horas siguientes a su inscripción.

CUOTAS DE INSCRIPCIÓN Las cuotas de inscripción son en dólares estadounidenses (USD). Las tarifas son aplicables solamente cuando tanto la inscripción como el pago se reciban antes de las fechas límite.
	TEMPRANA	NORMAL	IN SITU
	Antes del 16 de diciembre de 2022	Antes del 4 de mayo de 2023	IN SITU
Delegado	$780	$920	$1,075
Representante de la industria	$780	$920	$1,075
Profesionales de áreas afines a la medicina (PAM)	$415	$515	$615
Defensor de la comunidad, personal de ONM	$200	$300	$400
Persona con trastorno de la coagulación (PCTC)	$100	$150	$200

La cuota de inscripción incluye lo siguiente:

Acceso a todas las sesiones
Ingreso a la zona de exposiciones y posters
Acceso electrónico al programa final
Café durante recesos diariamente
Almuerzo diario
Certificado de asistencia (previa solicitud)
Créditos de educación médica continua (EMC) (si fueran aplicables)

PASAPORTE AL MUNDO

Las tarifas de Pasaporte al mundo solamente se aplican a ciudadanos residentes de algunos países. Vea la lista completa de países elegibles aquí.

PASAPORTE AL MUNDO – TARIFAS REDUCIDAS* Las cuotas de inscripción son en dólares estadounidenses (USD) y expiran a la media noche del Horario del Este (EST).
	TEMPRANA	NORMAL	IN SITU
	Antes del 16 de diciembre de 2022	Antes del 4 de mayo de 2023	IN SITU
Delegado (médico)	$390	$460	$460
Profesionales de áreas afines a la medicina (PAM)	$390	$460	$460
Defensor de la comunidad, personal de ONM	$75	$75	$105
Persona con trastorno de la coagulación (PCTC)	$75	$75	$105

Información importante*

Las cuotas arriba indicadas no pueden combinarse con ningún otro descuento.
Las cuotas de Pasaporte al mundo solo se aplican a ciudadanos residentes de algunos países. Vea la lista completa de países elegibles aquí.
Los candidatos a inscripción deberán proporcionar prueba de ciudadanía durante el proceso de inscripción (se aceptan pasaportes o documentos de identificación nacionales).
El descuento solo puede aplicarse al momento de la inscripción. No se otorgarán descuentos de manera retroactiva una vez completada la inscripción.
La cuota de Pasaporte al mundo solo aplica a médicos, proveedores de atención médica, personal de organizaciones nacionales miembros (ONM), voluntarios, personas con trastornos de la coagulación (PCTC) y sus familiares. La cuota no aplica a estudiantes o representantes de la industria.
Para obtener más información escribe a [email protected].

Cambios y cancelaciones en la inscripción

Cualquier cambio o cancelación de su inscripción deberá enviarse por escrito a [email protected]. Se le enviará una confirmación del cambio o la cancelación. Todas las solicitudes estarán sujetas a las siguientes condiciones:

No se permiten cambios de nombre.
Hasta el viernes 10 de marzo de 2023 se otorgará un reembolso equivalente al 75% de la cuota de inscripción pagada. Después del viernes 10 de marzo de 2023 no se otorgarán reembolsos.
No se aceptarán solicitudes de reembolso relacionadas con pagos de inscripción incorrectos o selección de categoría incorrecta.
La no asistencia se considerará como cancelación en el día del evento y tendrá un cargo de cancelación del 100%.

SALA DE TRATAMIENTO

Durante la Cumbre 2023 de la FMH se instalará una sala de tratamiento para hemofilia/trastornos de la coagulación en el Hotel Hilton Buenos Aires. La sala de tratamiento contará con médicos y enfermeros especializados disponibles para evaluar situaciones de urgencia relacionadas con los trastornos de la coagulación y prestar asistencia con las infusiones de concentrados, del 9 al 13 de mayo, para brindar el tratamiento adecuado y asesorar a los pacientes que presenten un episodio hemorrágico agudo o subagudo.

INFORMACIÓN GENERAL

Horario de atención:

FECHA	HORARIO	LUGAR
Martes 9 de mayo	14:00 – 20:00 ART	Hilton Hotel Suite # por confirmar
Miercoles 10 de mayo	08:00 – 18:00 ART
Jueves 11 de mayo
Viernes 12 de mayo
Sábado 13 de mayo	08:00 – 14:00 ART

Emergencias y problemas médicos no relacionados con un trastorno de la coagulación

Si su problema médico no se relaciona con un trastorno de la coagulación, le sugerimos que se comunique con un médico por medio del hotel/alojamiento, de su seguro de viaje, o bien que visite la sala de emergencias de uno de los hospitales locales:

Hospital General de Agudos Dr. Cosme Argerich
Dirección: Pi y Margall 750
Atención gratuita las 24 hs
Distancia: 15 minutos en auto

Los Servicios de Emergencias disponibles son:

SAME (llamar al 107) público
ECCO (contactarse con la recepción del hotel Hilton)

Para obtener una lista completa de los centros de tratamiento de hemofilia de Argentina, sírvase visitar el sitio web de la Fundación de la Hemofilia https://www.hemofilia.org.ar/lugares_de_atencion

PREGUNTAS FRECUENTES

Q ¿Quién puede participar en la Cumbre?

A Esta cumbre está abierta internacionalmente a todos los participantes.

Q ¿Qué incluye la cuota de inscripción?

A Todas las categorías de inscripción incluyen:

- Acceso a todas las sesiones
- Entrada a la zona de pósteres
- Recesos diarios para café
- Almuerzos diarios
- Certificado de asistencia (previa solicitud)
- Créditos de EMC (si corresponde)

Q Agencia de autorización AIFA:

A Autorización AIFA para compañías farmacéuticas italianas:

Atlante Viaggi ha sido nombrado para manejar todos los documentos legales requeridos por la Orden Legislativa Italiana n. 219/2006 Art.124 coma 2.
Atlante Viaggi Italia Srl
via Bandello 1
20123 Milano
[email protected]

Q ¿Cómo inscribo a un grupo?

RLas empresas y organizaciones que deseen registrar un grupo de 10 personas omas, deben seguir un procedimiento especial de inscripción.

Porfavorcontactar [email protected] para obtener la plantilla de inscripción grupal o inscribadirectamente a su grupo mediante nuestro sistema de inscripción en línea.

PUBLICACIÓN

¡El libro de resúmenes de la Cumbre 2023 de la FMH sobre atención integral ya está disponible! Para ver el suplemento en el Haemophilia Journal, haga clic aquí.

CONVOCATORIA PARA PRESENTAR RESÚMENES

El Comité del programa de la Cumbre 2023 de la FMH sobre atención integral invita a someter a consideración resúmenes para su presentación como artículos libres o posters. Se exhorta enfáticamente a presentar resúmenes que aborden soluciones e intervenciones relacionadas con los segmentos de la Cumbre. Alentamos solicitudes de profesionales de la salud de campos conexos en entornos académicos y comunitarios, y de organizaciones comunitarias, proveedores/organizaciones de atención médica, así como estudiantes que estén realizando trabajos innovadores.

Los resúmenes seleccionados se publicarán como suplemento en el periódico Haemophilia. ¡Esperamos recibir sus resúmenes!

La convocatoria para presentar resúmenes se cerrará el 6 de febrero de 2023.

Para someter a consideración un resumen haga clic aquí.

Envíe su resumen hoy y también puede ser elegible para uno de los premios enumerados a continuación. Siga leyendo para más detalles:

Christine Lee Haemophilia Journal Award

Todos los temas: médico, multidisciplinario y musculoesquelético

El Premio Christine Lee del periódico Haemophilia, establecido en 2012 por la Federación Mundial de Hemofilia (FMH) y Wiley, se otorga como reconocimiento a investigadores jóvenes (estudiantes de maestría o doctorado) distinguidos que sean los autores principales y presentadores de resúmenes altamente calificados en cualquier disciplina relacionada con la hemofilia u otros trastornos de la coagulación conexos. Los ganadores del premio reciben ₤ 3000 y una suscripción personal en línea de tres años al periódico Haemophilia.

Henri Horoszowski Award

Sólo temas musculoesqueléticos

Los resúmenes sobre temas musculoesqueléticos que reciban las mejores calificaciones serán candidatos para recibir el Premio Henri Horoszowski. Esta presea se otorga en reconocimiento a un investigador joven que sea el autor principal y presentador del resumen. El comité de selección elegirá la mejor presentación oral de un artículo libre y el ganador se anunciará durante la asamblea general del Comité de la FMH sobre temas musculoesqueléticos, el viernes 12 de mayo de 2023.

CRÉDITOS DE EMC

Accreditation statement

The WFH 2023 Comprehensive Care Summit: New Developments in Bleeding Disorders and MSK, Buenos Aires, Argentina, 10/05/2023-12/05/2023 has been accredited by the European Accreditation Council for Continuing Medical Education (EACCME®) with 13 European CME credits (ECMEC®s). Each medical specialist should claim only those hours of credit that he/she actually spent in the educational activity.

Through an agreement between the Union Européenne des Médecins Spécialistes and the American Medical Association, physicians may convert EACCME® credits to an equivalent number of AMA PRA Category 1 CreditsTM. Information on the process to convert EACCME® credit to AMA credit can be found at www.ama-assn.org/education/earn-credit-participation-international-activities.

Live educational activities, occurring outside of Canada, recognised by the UEMS- EACCME® for ECMEC®s are deemed to be Accredited Group Learning Activities (Section 1) as defined by the Maintenance of Certification Program of the Royal College of Physicians and Surgeons of Canada.

EACCME® credits

Each participant can only receive the number of credits he/she is entitled to according to his/her actual participation at the event once he/she has completed the feedback form. Cf. criteria 9 and 23 of UEMS 2016.20. Please find below the breakdown of maximum ECMEC^®s credits available per day:

05.2023 – 4.00
05.2023 – 5.00
05.2023 – 4.00

The EACCME^® awards ECMEC^®s on the basis of 1 ECMEC^® for one hour of CME with a maximum of 8 ECMEC^®s per day. Cf. Chapter X of UEMS 2016.20.

How do I claim credits?

To claim CME credits, participants will need to attend the eligible sessions taking place during the summit days from May 10-12, 2023, as well as complete the evaluation form for each of these sessions.

Eligible sessions are marked in the program with the following symbol

Participants will need to sign in at the door when joining each eligible session.

Evaluations will be available at the conclusion of each session via the event’s APP

Deadline to request a certificate was June 6, 2023

For more information, please contact [email protected].

ORADORES

Alain Baumann

Director ejecutivo,
Federación Mundial de Hemofilia
Montreal, Canadá

View profile >

VIAJE

Buenos Aires está bien conectada y es de fácil acceso, con tres aeropuertos, dos estaciones de autobuses, un puerto y una terminal de cruceros.

En avión

SkyTeam es nuestra red oficial para viajes aéreos. Viajes aéreos sin problemas y atractivas tarifas aéreas para la Cumbre están disponibles a través de SkyTeam Global Meetings. Al reservar y comprar su boleto de avión a través del enlace exclusivo que aparece a continuación se beneficiará de descuentos de hasta el 15% para pasajes tanto en clase de negocios como en clase económica.

Para reservar su viaje por avión ahora haga clic aquí o visite www.skyteam.com/en/business-solutions/global-meetings e ingrese el identificador (ID) del evento 4555S.

Buenos Aires cuenta con tres aeropuertos:

Aeropuerto Internacional Ministro Pistarini, Ezeiza (EZE)

El aeropuerto más grande de Argentina se encuentra en Ezeiza, a 32 km (20 millas) del centro de la ciudad de Buenos Aires. La mayoría de los vuelos internacionales de largo alcance aterrizan y despegan de este aeropuerto, al igual que algunos vuelos domésticos y regionales. El viaje del aeropuerto al centro de la ciudad tarda alrededor de 50 minutos.

Aeropuerto Jorge Newbery (también conocido como Aeroparque (AEP))

Ubicado dentro de la ciudad, en la zona de Palermo, este aeropuerto se encuentra a hasta 25 minutos de los principales hoteles en Buenos Aires. Ofrece vuelos a destinos principalmente domésticos y a países vecinos.

El Palomar (EPA)

Ubicado a 18km (11 millas) de la ciudad, el aeropuerto de El Palomar empezó a ofrecer en 2018 una gama de vuelos domésticos de bajo costo a destinos en todo el país.

Transporte desde los aeropuertos a la ciudad

Hay taxis disponibles en los tres aeropuertos.

Pueden reservarse traslados privados por adelantado o a su llegada. Tienda León ofrece transporte en autobús desde el aeropuerto de Ezeiza hasta su base en Puerto Madero, en el centro de la ciudad de Buenos Aires.

Los tres aeropuertos cuentan con servicio de autobuses públicos, y también hay una estación de tren en El Palomar. Sírvase notar que los servicios podrían estar abarrotados durante las horas pico y que hay poco espacio para el equipaje. Necesitará una tarjeta de viaje SUBE para utilizar el autobús o el tren. Estas están disponibles de distribuidores autorizados. Puede utilizar la aplicación BA Cómo Llego para saber cómo llegar a su destino utilizando el transporte público.

En autobús

La Terminal de Ómnibus de Retiro, o estación de autobús de Retiro ofrece servicio de transporte en autobús a cientos de destinos en Argentina y otros países latinoamericanos. El transporte de larga distancia en autobús es común en Argentina, y la mayoría de las empresas ofrecen muy cómodos asientos en clase “cama-ejecutivo”, y a menudo proporcionan alimentos durante servicios de larga distancia. Docenas de empresas operan en la estación de autobuses. Los boletos pueden comprarse en los quioscos del piso superior, de vendedores autorizados en la ciudad, o en línea. Puede obtenerse ayuda en la unidad 83 del Centro de atención al turista.

En transbordador

Existe un servicio periódico de transbordador entre Buenos Aires y Montevideo y Colonia de Sacramento, en Uruguay. Las terminales del transbordador en Buenos Aires se encuentran en Puerto Madero y La Boca. El servicio lo proporcionan las siguientes empresas:

Buquebus

Colonia Express

Información tomada de la página internet de Turismo de Buenos Aires

Los requisitos de entrada y salida pueden cambiar en cualquier momento, por favor consulte la siguiente pagina para obtener la información más actualizada sobre los requisitos de viaje: Migraciones | Argentina.gob.ar

ACERCA DE BUENOS AIRES

Buenos Aires es una ciudad cosmopolita llena de pasión y cultura. Su combinación de rico patrimonio arquitectónico y cultural, energía creativa moderna, vida nocturna electrizante, tradiciones únicas, vibrantes espacios artísticos, grandes parques y gente cálida y amigable la convierten en una de las capitales más interesantes del mundo.

Existen muchas razones para visitarla, por lo que la ciudad ha sido votada repetidamente como la mejor de América Latina por los usuarios de TripAdvisor.

Con temperaturas promedio de alrededor de 18 °C (64 °F), Buenos Aires goza de un clima templado y soleado, lo que la convierte en un gran destino en cualquier época del año.

La primavera y el otoño son las estaciones más lluviosas, y la Cumbre tendrá lugar durante la temporada de otoño de Argentina. Si bien las lluvias suelen ser ligeras, sería recomendable un paraguas.

ALOJAMIENTO

La Cumbre 2023 de la FMH sobre atención integral se llevará a cabo en el hotel Hilton Buenos Aires en el encantador distrito de Puerto Madero.

Todas las habitaciones de hotel: AGOTADAS.

Impuesto de la ciudad: Con base en reglamentos gubernamentales, a partir del 1^o de marzo del 2020, se cargará un impuesto de la ciudad de USD 1.50 por persona, por noche, a todos los huéspedes no argentinos.

IVA: El impuesto al valor agregado (IVA), que actualmente es del 21%, se agregará al costo de las reservaciones de hotel de personas que se identifiquen como residentes de la República Argentina.

La página de reservaciones de hotel estará disponible hasta el 5 de abril de 2023. Después de esta fecha, las habitaciones estarán sujetas a disponibilidad y no podrán garantizarse las tarifas. Agradeceremos envíe un mensaje a [email protected] para verificar la disponibilidad después del 5 de abril de 2023.

Pagos con tarjeta de crédito

La FMH cargará a su tarjeta de crédito un depósito no reembolsable equivalente a una noche de alojamiento. El saldo se cargará sesenta (60) días antes del evento, el 10 de marzo de 2023. No se otorgarán reembolsos por cancelaciones recibidas después del 10 de marzo de 2023.

Pagos mediante transferencia bancaria

Si no pudiera proporcionar una garantía con tarjeta de crédito se le facturará por el equivalente al 100% del costo total de su alojamiento. En caso de cancelaciones recibidas antes del 10 de marzo de 2023 se otorgará un reembolso un mes después del Congreso, menos un cargo administrativo equivalente a una noche de alojamiento. En caso de cancelaciones recibidas después del 10 de marzo de 2023 no se otorgarán reembolsos.

Cambios y cancelaciones en reservaciones de hotel

Cualquier cambio o cancelación de su inscripción debe enviarse por escrito a [email protected]. Se le enviará una confirmación del cambio o cancelación de la reservación. Todas las solicitudes están sujetas a las siguientes condiciones:

No se permiten cambios de nombre. Todos los cambios de nombre estarán sujetos a la política de cancelación. Agradeceremos que NO se comunique con el hotel directamente.
En caso de cancelaciones recibidas después del 10 de marzo de 2023 no se otorgarán reembolsos.
Si necesitara dejar el hotel antes de lo planeado tampoco se otorgarán reembolsos.

Reservaciones grupales

Una reservación grupal consiste en una reservación de diez (10) o más habitaciones. Deberá designarse a una persona para fungir como coordinadora del grupo y responsabilizarse de toda la correspondencia con la Oficina de alojamiento de la FMH. Si deseara hacer una reservación grupal escriba a [email protected], y especifique el número de habitaciones requeridas por día. Sírvase notar que los grupos de habitaciones se asignarán conforme se reciban las solicitudes.

El depósito necesario puede hacerse mediante tarjeta de crédito (Visa o MasterCard) o transferencia bancaria. A partir del 5 de abril de 2023 solo se aceptarán pagos con tarjeta de crédito. Todas las solicitudes de información, modificaciones o cancelaciones a las habitaciones reservadas deberán enviarse por escrito a la Oficina de alojamiento de la FMH. Agradeceremos que NO se comunique con el hotel directamente.

PATROCINADORES

La FMH desea agradecer a nuestros patrocinadores de la Cumbre 2023 de la FMH sobre atención integral por su continuo apoyo.

Platino

Patrocinador

Para cualquier pregunta agradeceremos comunicarse con:

Danielle André

Gerente senior de congresos, reuniones y exposiciones de la FMH, Federación Mundial de Hemofilia

Tel (514) 394-2820

Correo-e: [email protected]

SILVER SPONSORS

NOTICIAS SOBRE EVENTOS

HEMNET Forum showcases progress in bleeding disorders management in Eastern Mediterranean

Foro de HEMNET destaca avances en la gestión de los trastornos de la coagulación en el Mediterráneo del Este

El médico y profesor Selim Nekkal, jefe de hematología del Hospital Beni Messous, en Argel, Argelia, fue el anfitrión del 6o Foro de la Red de Hemofilia del Mediterráneo del Este (HEMNET) en Argel, del 31 de octubre al 2 de noviembre de 2024, en colaboración con la Sociedad Argelina de hematología. HEMNET es una red de expertos médicos regionales que opera bajo el auspicio de la FMH. Con una combinación de impresionantes presentaciones y paneles, el foro profundizó en los enfoques regionales y los éxitos en el tratamiento de la hemofilia, de la enfermedad de Von Willebrand y de los trastornos plaquetarios, generando nuevas ideas para la colaboración y la investigación transfronterizas.

Leer historia >

¡La convocatoria para someter a consideración resúmenes: el Cumbre 2025 sobre atención integral

Sírvase notar que, al momento de la publicación, la Cumbre 2025 sobre atención integral se realizará únicamente en inglés. Otros idiomas podrían añadirse posteriormente.

Leer historia >

Se revela el tema del Día mundial de la hemofilia 2025

El 17 de abril de 2025, la comunidad mundial de trastornos de la coagulación se reunirá para celebrar el Día mundial de la hemofilia. El tema de este año es “Acceso para todos: Mujeres y niñas también sufren hemorragias”. En la actualidad, mujeres y niñas con trastornos de la coagulación (MNTC) aún se encuentran subdiagnosticadas y desatendidas. La comunidad mundial de trastornos de la coagulación tiene el poder –y la responsabilidad– de modificar esta situación. La calidad de vida de mujeres y niñas mejorará mediante el reconocimiento, el diagnóstico, el tratamiento y la atención, y se fortalecerá la comunidad de trastornos de la coagulación.

Leer historia >

Disclaimer

The information on the WFH website is provided for general information purposes only. The WFH does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or consultation on a specific medical problem, the WFH recommends that you contact your physician or local treatment centre. Before administering any products, the WFH urges patients to check dosages with a physician or hemophilia centre staff, and to consult the pharmaceutical company’s printed instructions.

While every effort has been made to ensure the accuracy of the information on this site, the WFH does not guarantee the information is accurate, and is not responsible in any way whatsoever for damages arising out of the use of this website or any of the information contained herein.

Messages posted to WFH discussion forums, Facebook, Twitter, and other social media platforms do not represent the opinions of the World Federation of Hemophilia, its staff, or Board of Directors. The author of a message is solely responsibility for its content. Information posted on WFH social networks and platforms should never be a substitute for individualized professional medical advice, even when the author has medical qualifications or is considered an authority. Information posted to a discussion group should not be used to diagnose or treat a specific health problem without consulting a qualified healthcare professional. The WFH recommends that you contact your physician or local treatment centre if you have any individual questions or concerns.

References and links to other websites or references to other organizations, products, services, or publications do not constitute endorsement or approval by the WFH. The WFH is not responsible and assumes no liability for the content of any linked websites.

Fraud Alert

Unauthorized solicitations – Warning

The WFH has been made aware of various correspondences—circulated via e-mail and telephone—coming from individuals impersonating WFH staff or falsely stating that they are associated with the WFH. These correspondences, which may seek to obtain money using the name of someone affiliated with the WFH, are fraudulent and come from outside of our organization.

If you receive a suspicious solicitation, exercise extreme caution. In the case of an email, look at the email address to see if it looks suspicious (for example, all WFH emails come from @wfh.org).

We are asking you to remain vigilant, and if you have any doubts about the correspondence, please forward the email to the WFH at [email protected] or call +1 514-875-7944.

Hemophilia Alliance

Recognizing that training women leaders ensures the diversity our community need to thrive; the Hemophilia Alliance has been a longtime supporter of the Susan Skinner Memorial Fund. They deepened their engagement with the global community through the establishment of the Travel Grant Program, which allows US-based multidisciplinary healthcare professionals the opportunity to attend WFH global training workshops. The wealth of experience and perspective attendees bring back home to their communities helps patients across the country. Their patience and support as we grappled with changing norms in these challenging times gave us the flexibility to meet our community’s needs with revamped programming.

India - Mumbai

Año de designación del CIEHEMO: 2000

National Institute of Immunohaematology (ICMR) and KEM Hospital

Áreas de especialidad

Hematología pediátrica y adultos
Diagnóstico de laboratorio y hemostasia
Genética molecular
Cuidados dentales
Enfermería
Cuidados ortopédicos
Fisioterapia

India - Vellore

Año de designación del CIEHEMO: 2000

Christian Medical College, Vellore

Áreas de especialidad

Hematología pediátrica y adultos
Diagnóstico de laboratorio y hemostasia
Genética molecular con diagnóstico prenatal
Enfermería
Manejo musculoesquelético – Terapia física y ocupacional con fisiatría
Cirugía y cuidados ortopédicos
Banco de sangre
Cuidados dentales
Psicología/Servicios sociales
Diagnóstico prenatal

Singapur - Singapur

Año de designación del CIEHEMO: 2002

Singapore General Hospital Haemophilia Treatment Clinic

Áreas de especialidad

Hematología adultos
Diagnóstico de laboratorio
Enfermería
Cuidados dentales
Cuidados ortopédicos (sin cirugía)
Fisioterapia
Psicología

Senegal - Dakar

Año de designación del CIEHEMO: 2016

Centre International de Traitement de l’Hémophilie (CITH) de Dakar
Centre National de Transfusion Sanguin (CNTS)

Áreas de especialidad

Hematología pediátrica y adultos
Diagnóstico de laboratorio y hemostasia
Enfermería
Banco de sangre
Fisioterapia

Rusia – Moscú y San Petersburgo

Año de designación del CIEHEMO: 2010

National Medical Research Center of Hematology of the Russian Academy of Medical Sciences

Áreas de especialidad

Hematología adultos
Enfermería
Cirugía ortopédica

Países Bajos - Utrecht

Año de designación del CIEHEMO: 1996

Van Creveldkliniek
University Medical Centre Utrecht

Áreas de especialidad

Hematología pediátrica y adultos
Diagnóstico de laboratorio y hematología
Enfermería
Cirugía y cuidados ortopédicos
Fisioterapia/Terapia ocupacional
Psicología y servicios sociales

Japón - Nara

Año de designación del CIEHEMO: 1998

Nara Hemophilia Centre
Nara Medical University

Áreas de especialidad

Hematología pediátrica y adultos
Cuidados dentales
Diagnóstico de laboratorio y genética molecular
Enfermería
Cirugía y cuidados ortopédicos
Fisioterapia

Italia - Milán

Año de designación del CIEHEMO: 1972

Angelo Bianchi Bonomi Hemophilia and Thrombosis Centre
Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico

Áreas de especialidad

Hematología pediátrica y adultos
Banco de sangre
Cuidados dentales
Valoración diagnóstica de defectos de la función plaquetaria
Diagnóstico de laboratorio y hemostasia
Genética molecular
Enfermería
Cirugía y cuidados ortopédicos
Fisioterapia
Psicología y servicios sociales

Israel - Tel Hashomer

Año de designación del CIEHEMO: 1993

National Hemophilia Center, Tel Hashomer
Sheba Medical Center

Áreas de especialidad

Hematología pediátrica y adultos
Cirugía ortopédica
Enfermería
Fisioterapia
Cuidados dentales
Diagnóstico de laboratorio (sin genética)
Psicología

París - Francia

Año de designación del CIEHEMO: 1972

Paris Haemophilia Centre (Necker (N) and Kremlin Bicêtre (KB) Hospitals)

Áreas de especialidad

Hematología pediátrica y adultos
Diagnóstico de laboratorio y hemostasia
Enfermería
Cuidados dentales
Cirugía y cuidados ortopédicos
Fisioterapia
Psicología y servicios sociales

España - Madrid

Año de designación del CIEHEMO: 2018

Hospital Universitario La Paz

Áreas de especialidad

Hematología pediátrica y adultos
Fisioterapia/Terapia ocupacional
Cuidados dentales
Cuidados ortopédicos (sin cirugía)
Diagnóstico de laboratorio
Enfermería
Psicología/Servicios sociales

España - Valencia

Año de designación del CIEHEMO: 1997

Haemostasis and Thrombosis Unit
Haematology Service, University and Polytechnic Hospital

Áreas de especialidad

Hematología pediátrica y adultos
Diagnóstico de laboratorio y hemostasia
Genética molecular
Enfermería
Cirugía y cuidados ortopédicos
Fisioterapia
Banco de sangre
Psicología y servicios sociales

Egipto – El Cairo

Año de designación del CIEHEMO: 2015

Shabrawishi Hospital, Egyptian Society of Hemophilia, and Cairo University

Áreas de especialidad

Hematología pediátrica y adultos
Diagnóstico de laboratorio y hemostasia
Enfermería
Genética molecular
Banco de sangre
Fisioterapia

Canadá - Toronto

Año de designación del CIEHEMO: 2018

University of Toronto Hemophilia Centres
St. Michael’s Hospital

Áreas de especialidad

Servicios hematológicos para adultos
Servicios de hematología pediátrica
Fisioterapia/Terapia ocupacional
Cuidados dentales
Cuidados ortopédicos (sin cirugía)
Diagnóstico de laboratorio
Enfermería
Psicología/Servicios sociales

Brasil - Campinas, SP

Año de designación del CIEHEMO: 2008

Hemocentro – “Unidade de Hemofilia Cláudio Luiz Pizzigatti Corrêa”
Hemocentro Unicamp, University of Campinas

Áreas de especialidad

Hematología pediátrica y adultos
Diagnóstico de laboratorio y genética molecular
Enfermería
Odontología
Cirugía y cuidados ortopédicos
Fisioterapia

Bélgica - Bruselas

Año de designación del CIEHEMO: 2013

Haemostasis and Thrombosis Unit
Division of Haematology
Cliniques universitaires Saint-Luc

Áreas de especialidad

Hematología pediátrica y adultos
Diagnóstico de laboratorio
Cirugía y cuidados ortopédicos
Fisioterapia

Austria - Viena

Año de designación del CIEHEMO: 1972

Medical University of Vienna
Department of Medicine I
Clinical Division of Hematology and Hemostaseology

Áreas de especialidad

Hematología pediátrica y adultos

Australia - Melbourne

Año de designación del CIEHEMO: 2005

Ronald Sawers Haemophilia Treatment Centre

Áreas de especialidad

Hematología adultos
Diagnóstico de laboratorio y hemostasia
Cirugía y cuidados ortopédicos
Enfermería
Cuidados dentales
Banco de sangre
Psicología
Trabajo social

Argentina - Buenos Aires

Año de designación del CIEHEMO: 1974

Instituto Asistencial “Dr. Alfredo Pavlovsky”
(Fundación de la Hemofilia)

Instituto De Investigaciones Hematológicas “Dr. Mariano R. Castex” (IIHEMA
(Academia Nacional de Medicina)

Áreas de especialidad

Hematología pediátrica y adultos
Fisioterapia
Cuidados dntales
Cirugía y cuidados ortopédicos
Diagnóstico de laboratorio y diagnóstico genético
Enfermería
Psicología
Servicios sociales

Sudáfrica - Johannesburgo

Año de designación del CIEHEMO: 2016

Haemophilia Comprehensive Care Centre
Charlotte Maxeke Johannesburg Academic Hospital

Áreas de especialidad

Hematología pediátrica y adultos
Cuidados dentales
Diagnóstico de laboratorio y hemostasia
Enfermería
Cirugía ortopédica
Fisioterapia

Suecia - Malmö

Año de designación del CIEHEMO: 1976

Malmö Centre for Thrombosis and Haemostasis
Department for Hematology and Coagulation Disorders, Skåne University Hospital
Skåne University Hospital

Áreas de especialidad

Hematología pediátrica y adultos
Banco de sangre (a pedido)
Cuidados y cirugía dentales
Diagnóstico de laboratorio y genética
Enfermería
Cirugía y cuidados ortopédicos
Fisioterapia

Hemophilia of Georgia

Hemophilia of Georgia has stood with us for over three decades, playing an early role in distributing donated factor via the WFH Humanitarian Aid program. Our relationship has deepened over the years as they continued to support this program and came on board as a founding Chapter Challenge champion in 2016. Their belief in educating future leaders is clear in their investment in the Youth Leadership Workshops, which has led to the training of over 50 young adults. They also support workshops devoted to educating providers and patient leaders on how to collect and use data to advocate for better patient care. Their staff generously volunteer their time as trainers and as well as serving on various committees.

WFH President's Award - Recipients

National Bleeding Disorders Foundation

The National Bleeding Disorders Foundation helps advance our mission on several fronts. They inspire others to follow their lead as a founding champion of the NHF Chapter Challenge. Their commitment to equality of access is demonstrated in their support of the Cornerstone Initiative, which lays the foundation for care in the world's most underserved regions, as well as programs that aim to raise awareness and improve care of women with bleeding disorders and those with von Willebrand disease. We also benefit from their steadfast engagement with various programs including the WFH Twinning Program and their individual leaders’ contribution to our leadership and committees.

Legacy Gift

Do you sometimes wish you could do more? A bequest is a simple way for you to make a significant gift without changing anything about your financial security and lifestyle today. Your legacy will sustain care for the generations to come.

Download these sample clauses to give to your legal advisor.

We understand if you prefer to remain anonymous, but we would be very honoured if you would let us know of your intentions so that we may thank you personally. We would also be happy to answer any questions you may have or give you additional information. Please contact Jennifer Laliberté at 514‑875‑7944 ext.2822 or [email protected].

Disclaimer

The information on the WFH USA website is provided for general information purposes only. The WFH USA does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or consultation on a specific medical problem, the WFH USA recommends that you contact your physician or local treatment centre. Before administering any products, the WFH USA urges patients to check dosages with a physician or hemophilia centre staff, and to consult the pharmaceutical company’s printed instructions.

While every effort has been made to ensure the accuracy of the information on this site, the WFH USA does not guarantee the information is accurate, and is not responsible in any way whatsoever for damages arising out of the use of this website or any of the information contained herein.

Messages posted to WFH USA discussion forums, Facebook, Twitter, and other social media platforms do not represent the opinions of the World Federation of Hemophilia, its staff, or Board of Directors. The author of a message is solely responsibility for its content. Information posted on WFH USA social networks and platforms should never be a substitute for individualized professional medical advice, even when the author has medical qualifications or is considered an authority. Information posted to a discussion group should not be used to diagnose or treat a specific health problem without consulting a qualified healthcare professional. The WFH USA recommends that you contact your physician or local treatment centre if you have any individual questions or concerns.

References and links to other websites or references to other organizations, products, services, or publications do not constitute endorsement or approval by the WFH USA. The WFH USA is not responsible and assumes no liability for the content of any linked websites.

Website privacy policy

The WFH USA does not collect personally identifying information about you when you visit our site, unless you choose to provide such information to us. Providing such information is strictly voluntary. This policy is your guide to how we will handle information we learn about you from your visit to our website.

Use of links

Throughout our website, we provide links to other servers which may contain information of interest to our readers. We take no responsibility for, and exercise no control over, the organizations, views, or accuracy of the information contained on other servers. When linking to the WFH USA, we request that you ensure that there are no associated connections for commercial purposes. Any official use of the name WFH USA or the use of its logo needs to be approved by the WFH USA. If you have a link you’d like us to consider adding to our website, please send an email to [email protected] with the subject “Link request.”

Use of text and images

All information, photographs, graphics, and other material on this website are protected by copyright. While users of this website may use the content for personal, non-commercial use, none of the content of this website can be modified, translated, transferred or sold, copied, reproduced, published, or distributed, in whole or in part, without the prior written consent of the WFH USA. To view a copy of the WFH USA’s permissions guidelines, click here.

The WFH USA encourages the dissemination of its information and welcomes proposals on the reprinting, redistribution, and translation of its materials. If you would like to publish information that you find on our website, please send your request to [email protected].

Accessibility

If you have suggestions on how to make the site more accessible, please contact us at [email protected].

Opt-Out or Change Your Contact Information

Our website provides users the opportunity to opt-out of receiving communications from us through a special online form or via the communication they have received. You may, at all times, choose to receive which communications within the organization you can receive or none at all. You may also update your contact information previously provided to us via another online form.

Questions about our policies

If you have any questions about this privacy statement, the practices of this site, or your dealings with this website, you can contact us at [email protected].

Fraud alert

Unauthorized solicitations – Warning

The WFH USA has been made aware of various correspondences—circulated via e-mail and telephone—coming from individuals impersonating WFH USA staff or falsely stating that they are associated with the WFH USA. These correspondences, which may seek to obtain money using the name of someone affiliated with the WFH USA, are fraudulent and come from outside of our organization.

If you receive a suspicious solicitation, exercise extreme caution. In the case of an email, look at the email address to see if it looks suspicious (for example, all WFH USA emails come from @wfhusa.org or @wfh.org).

We are asking you to remain vigilant, and if you have any doubts about the correspondence, please forward the email to the WFH USA at [email protected] or call 1-877-417-7944.

Premio internacional de la FMH por servicios destacados - receptores

International Lifetime Achievement Award - Recipients

Previous years

2012	Christine Lee United Kingdom
2006	Dr. Bruce Evatt United States

Premio internacional de la FMH al voluntariado por la atención de la salud - receptores

AÑOS PASADOS

2012	Piet de Kleijn Países Bajos
2010	Dr. Mammen Chandy India
2008	Dr. Man-Chiu Poon Canadá
2006	Dr. Norma de Bosch Venezuela
2004	Dr. Parttraporn Insarangkura Tailandia Dr. Carol K. Kasper Estados Unidos

Tailandia - Bangkok

Año de designación del CIEHEMO: 1984

International Hemophilia Training Center – Bangkok
Ramathibodi Hospital
Mahidol University

Áreas de especialidad

Hematología pediátrica y adultos
Banco de sangre
Cuidados y cirugía dentales
Diagnóstico de laboratorio y hemostasia
Enfermería
Cirugía y cuidados ortopédicos
Fisioterapia
Psicología y servicios sociales

Premios a los hermanamientos del año

2020	Aluva (India) – Newcastle (Reino Unido)
2019	Yogyakarta / Solo (Indonesia) – Utrecht (Países Bajos)
2018	Abidjan (Costa de Marfil) – Bruselas (Bélgica)
2017	Santa Cruz de la Sierra (Bolivia) – Buenos Aires (Argentina)
2016	Kampala (Uganda) – Londres (Reino Unido)
2015	Varna (Bulgaria) – Bonn (Alemania)
2014	Arequipa (Perú) – Los Ángeles (Estados Unidos)
2013	Davangere (India) – Liverpool (Reino Unido) Ludhiana (India) – Detroit (Estados Unidos)
2012	Hanói (Vietnam) – Melbourne (Australia)
2011	Manado (Indonesia) – Utrecht (Países Bajos)
2010	Delhi (India) – Winnipeg (Canadá) Yaoundé (Camerún) – Ginebra (Suiza)
2009	Chisinau (Moldovia) – Varsovia (Polonia) Colombo (Sri Lanka) – Vellore (India)
2008	Gaborone (Botswana) – Filadelfia (Estados Unidos)
2007	Vientiane (Laos) – Brest (Francia) Damasco (Siria) – Montpellier (Francia)
2006	Lima (Perú) – Fort Worth (Estados Unidos)
2005	Ereván (Armenia) – Minneapolis (Estados Unidos) Casablanca (Marruecos) – Caen (Francia)
2004	Beirut (Líbano) – Ginebra (Suiza) Santo Domingo (República Dominicana) – Caracas (Venezuela)
2003	El Cairo (Egipto) – Knoxville (Estados Unidos)
2002	Moscú (Rusia) – Liverpool (Reino Unido) Panamá – Valencia (España)
2001	Bangalore (India) – St. Louis (Estados Unidos)
2000	Pune (India) – Bradford (Reino Unido)
1999	Montevideo (Uruguay) – Buenos Aires (Argentina) Tianjin (China) – Calgary (Canadá)
1998	Plovdiv (Bulgaria) – Bonn (Alemania)
1997	Bogotá (Colombia) – Los Ángeles (Estados Unidos) Tartu (Estonia) – Estocolmo (Suecia)
1996	Timisoara (Rumanía) – Múnich (Alemania) Riga (Letonia) – Munster (Alemania)
1995	Klaipeda (Lituania) – Malmo (Suecia)
1994	Bratislava (Eslovaquia) – Tel Hashomer (Israel)

Premio Pietrogrande

2021	Axel Seuser Alemania
2019	Dr. Adolfo Llinás Colombia
2017	Pamela Hilliard Canadá
2015	Kathy Mulder Canadá
2013	James Luck Estados Unidos
2012	Piet de Kleijn Países Bajos
2011	Dr. Lily Heijnen Países Bajos
2010	Dr. Horacio Caviglia Argentina
2009	Jerome D. Wiedel Estados Unidos
2008	Dr. Federico Fernández-Palazzi Venezuela
2007	Michael Heim Israel
2006	Brenda Buzzard Reino Unido
2005	Dr. Marvin Gilbert Estados Unidos

Premio Henri Horoszowski

2021	Baolai Hua Yangzhou College, Xuzhou Medical University	The effects of intra-articular injection of TNF-alpha Antagonists in treatment of haemophilic synovitis
2019	Maarten Eerdekens Bélgica	Asociación entre la cinética multisegmento del pie y el daño articular inducido por la sangre en pacientes adultos con artropatía hemofílica del tobillo
2017	Fabio Souza Brasil	Decrease in joint inflammation, swelling and pain after a swimming protocol in animal model of experimental-induced hemarthrosis
2015	SM Javd Mortazavi Irán	Bilateral total knee arthroplasty in patients with hemophilia: A safe and cost-effective procedure
2013	Lize F.D. van Vulpen Estados Unidos	Una proteína de fusión de IL4 e IL10 es igualmente eficaz para proteger el cartílago del daño inducido por la sangre en comparación con los componentes
2012	Horacio Caviglia Argentina	Cirugía de pseudotumor en pacientes con hemofilia A: resultados comparativos entre pacientes inhibidores y no inhibidores
2011	Nick Goddard Reino Unido y Monique van Meegeren Países Bajos	La administración temprana de IL-4 e IL-10 previene el daño del cartílago inducido por la sangre in vitro
2010	Lydia Abad-Franch España	Influencia de un protocolo de entrenamiento acuático en la reducción del riesgo de morbilidad y mortalidad cardiovascular en un hemofílico
2009	Sebastien Lobet Bélgica	Impacto de la artropatía del tobillo con hemofilia en la discapacidad de la marcha: análisis de variables energéticas y mecánicas
2008	Jose Alberto Tlacuilo-Parra México	Marcadores de rotación ósea y densidad mineral ósea en niños con hemofilia
2007	Natalie Jansen Países Bajos	Capacidades protectoras de la interleucina-10 en el daño del cartílago inducido por la sangre
2006	Axel Seuser y E. Kusch Alemania	Estudio multicéntrico del resultado ortopédico de las extremidades inferiores en 249 niños con hemofilia
2005	Frank van Genderen, Nico van Meeteren, Lily Heijnen, Piet de Kleijn, Marijke van den Berg, Paul Helders Países Bajos	Lista de actividades para la hemofilia: desarrollo final y validación de un cuestionario de autoevaluación específico para hemofilia sobre las capacidades funcionales
2004	Goris Roosendaal, Zalima N Jahangier, Kim MG Jacobs, Johannes WJ Bijlsma, Floris PJG Lafeber Países Bajos	La radiosinoviortesis con YTTRIUM-90 da como resultado efectos directos adversos sobre el cartílago: un estudio in vitro en humanos
2003	Axel Seuser, Thomas Wallny, Günter Schumpe, Elmar Trunz, Hans-Hermann Brackman Alemania	¿Cómo aconsejar a los jóvenes hemofílicos que encuentren el deporte adecuado? Un algoritmo nuevo y seguro
2002	James Luck, Jr. y Mauricio Silva Estados Unidos	Revisión a largo plazo de la artroplastia total de rodilla
2001	Federico Fernández-Palazzi Venezuela	Clorhidrato de oxitetraciclina: un nuevo material para las órtesis sinoviales químicas
2000	Horacio Caviglia Argentina	Pseudotumores
1999	William J. Ribbans y J.L. Hicks Reino Unido	Comunicación y cooperación para el nuevo milenio: el futuro del comité musculoesquelético en el siglo XXI
1998	Adolfo Llinas, Mauricio Silva, Monica Duarte, Gonzalo Ucros, Graciela Perini, Angela Maria Cerquera, Andres Forero Colombia	La sinoviortesis de fosfato crómico sin restricción de edad debería ser la primera opción de tratamiento para la sinovitis hemofílica activa crónica

Premio internacional Frank Schnabel de la FMH - receptores

AÑOS PASADOS

2012	Martha Patricia Monteros Rincon México
2010	Antonia Luque de Garrido Venezuela
2008	Jean Michel Bouchez Francia
2006	Yuri Zhulyov Rusia
2004	Ashok Verma India

Escalas funcionales

Los resultados de interés recolectados en el RMTC abarcan características demográficas, resultados médicos y relacionados con el tratamiento, resultados de la carga de la enfermedad, y resultados reportados por los pacientes.

El RMTC incluye cinco escalas funcionales (en inglés) como parte de su conjunto de datos ampliados:

Puntaje de salud articular en la hemofilia
Enfermedad articular
Rango de moción/movimiento (RDM)
Puntaje de la FMH (Gilbert)
Puntaje de independencia funcional para la hemofilia (FISH por su sigla en inglés)

Conjuntos de datos de hemofilia del RMTC

Conjunto de datos mínimo del RMTC

El conjunto de datos mínimo (CDM) es un grupo de datos demográficos, sobre diagnóstico, síntomas y tratamiento que se recolecta de los pacientes que participan en el RMTC.

Conjunto de datos ampliado del RMTC

El conjunto de datos ampliado (CDA)es un grupo de datos más grande, con mayores detalles que el CDM, que abarca preguntas sobre datos demográficos, diagnóstico, síntomas, tratamiento y carga de la enfermedad de los pacientes. Los centros de tratamiento de hemofilia pueden utilizar el CDA para recolectar información de pacientes que participan en el RMTC. El conjunto de datos ampliado (CDA) del RMTC se agregó a la base de datos en marzo del 2019.

Estados Unidos - Columbus, Ohio

Año de designación del CIEHEMO: 2018

Nationwide Children’s Hospital

Áreas de especialidad

Cuidados dentales
Diagnóstico de laboratorio
Enfermería
Cirugía y cuidados ortopédicos
Servicios de hematología pediátrica
Fisioterapia/Terapia ocupacional
Psicología/Servicios sociales

Estados Unidos - Houston, Texas

Año de designación del CIEHEMO: 2000

Gulf States Hemophilia and Thrombophilia Center
University of Texas Health Science Center at Houston

Áreas de especialidad

Hematología pediátrica y adultos
Diagnóstico de laboratorio y hemostasia
Enfermería
Banco de sangre
Fisioterapia/Terapia ocupacional
Psicología/Servicios sociales

Estados Unidos - Los Ángeles, California

Año de designación del CIEHEMO: 1970

Lifespan Orthopaedic Hemophilia Treatment Center at Luskin Orthopedic Institute for Children

Áreas de especialidad

Hematología pediátrica y adultos
Diagnóstico de laboratorio y hemostasia
Enfermería
Cirugía y cuidados ortopédicos
Fisioterapia
Psicología/Servicios sociales

Estados Unidos – Nueva York, Nueva York

Año de designación del CIEHEMO: 1993

Mount Sinai School of Medicine
Mount Sinai Medical Center

Áreas de especialidad

Hematología pediátrica y adultos
Diagnóstico de laboratorio y hemostasia
Enfermería
Cirugía y cuidados ortopédicos
Genética molecular
Servicios sociales

Estados Unidos - Rochester, Minnesota

Año de designación del CIEHEMO: 1974

Mayo (Rochester) Comprehensive Hemophilia Center, and International Hemophilia Training Center (WFH)
Mayo Clinic/Foundation and Mayo Medical School

Áreas de especialidad

Hematología pediátrica y adultos
Banco de sangre
Diagnóstico de laboratorio y hemostasia
Genética molecular
Enfermería
Cirugía y cuidados ortopédicos
Fisioterapia
Psicología/Servicios sociales

Estados Unidos - San Diego, California

Año de designación del CIEHEMO: 2018

Hemophilia & Thrombosis Treatment Center
University of California San Diego

Áreas de especialidad

Hematología adultos
Fisioterapia/Terapia ocupacional
Cuidados dentales
Cuidados ortopédicos (sin cirugía)
Diagnóstico de laboratorio
Enfermería
Psicología/Servicios sociales

Reino Unido – Londres

Año de designación del CIEHEMO: 1970

Katharine Dormandy Haemophilia Centre and Thrombosis Unit
Royal Free Hospital

Áreas de especialidad

Hematología adultos
Diagnóstico de laboratorio y hemostasia
Enfermería
Cirugía y cuidados ortopédicos
Fisioterapia/Terapia ocupacional
Genética molecular
Psicología/Servicios sociales

Reino Unido – Oxford

Año de designación del CIEHEMO: 1972

Oxford Haemophilia and Thrombosis Centre
Churchill Hospital

Áreas de especialidad

Hematología pediátrica y adultos
Diagnóstico de laboratorio y hemostasia
Cirugía y cuidados ortopédicos
Enfermería
Genética molecular
Fisioterapia/Terapia ocupacional
Psicología y servicios sociales

Reino Unido - Sheffield

Año de designación del CIEHEMO: 1992

Sheffield Haemophilia and Thrombosis Centre
Royal Hallamshire Hospital

Áreas de especialidad

Hematología adultos
Diagnóstico de laboratorio y hemostasia
Genética molecular

Nuestra historia

Frank Schnabel, un hombre de negocios canadiense con hemofilia A grave, fundó la FMH en 1963. Schnabel estaba convencido de que las organizaciones de pacientes podían ser mucho más eficaces, y hacer más para representar los intereses de las personas con trastornos de la coagulación, si trabajaban unidas. El primer Congreso de la FMH se realizó en Copenhague, Dinamarca, el 25 de junio de 1963, y en él participaron representantes de 12 países. Actualmente, la FMH y su red mundial de organizaciones nacionales miembros (ONM) representan los intereses de personas con hemofilia y otros trastornos de la coagulación hereditarios en 152 naciones.

Política de privacidad de las plataformas digitales de la FMH

INTRODUCTION

1.

PURPOSE

2.

SCOPE

3.

DEFINITION OF "PERSONAL INFORMATION"

4.

RESPONSIBILITIES OF WFH

5.

HOW DO WE COLLECT YOUR CONSENT?

6.

WHY WE COLLECT PERSONAL INFORMATION

7.

WHAT PERSONAL INFORMATION DO WE COLLECT?

8.

USE OF COOKIES

9.

RESPONSES TO JOB OFFERS

10.

PROTECTION OF THE PRIVACY OF MINORS

11.

DO WE DISCLOSE YOUR PERSONAL INFORMATION TO THIRD PARTIES?

12.

SHARING PERSONAL INFORMATION OUTSIDE QUÉBEC

13.

HOW DO WE PROTECT YOUR PERSONAL INFORMATION?

14.

RETENTION AND DESTRUCTION OF PERSONAL INFORMATION

15.

ACCESSING, CORRECTING, DE-INDEXING AND PORTABILITY OF YOUR PERSONAL INFORMATION

16.

WITHDRAWING YOUR CONSENT

17.

CHANGES TO OUR PRIVACY POLICY

18.

CONTACT DETAILS FOR THE PRIVACY OFFICER

APPENDIX A

APPENDIX A

Condiciones de uso de las plataformas digitales de la FMH

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Cumbre 2023 de la FMH sobre atención integral: Nuevos avances en trastornos de la coagulación y temas musculoesqueléticos (MSK)

INFORMACIÓN PARA LA INSCRIPCIÓN

PASAPORTE AL MUNDO

Cambios y cancelaciones en la inscripción

SALA DE TRATAMIENTO

Horario de atención:

PREGUNTAS FRECUENTES

PUBLICACIÓN

CONVOCATORIA PARA PRESENTAR RESÚMENES

CRÉDITOS DE EMC

AGENDA

PROGRAMA INTERACTIVO

Calendario

ORADORES

VIAJE

ACERCA DE BUENOS AIRES

ALOJAMIENTO

PATROCINADORES

Platino

Patrocinador

NOTICIAS SOBRE EVENTOS

Foro de HEMNET destaca avances en la gestión de los trastornos de la coagulación en el Mediterráneo del Este

¡La convocatoria para someter a consideración resúmenes: el Cumbre 2025 sobre atención integral

Se revela el tema del Día mundial de la hemofilia 2025

WHO WE ARE

SUPPORT

OUR WORK

COLLABORATE

Disclaimer

Fraud Alert

Unauthorized solicitations – Warning

QUIÉNES SOMOS

APOYO

NUESTRA LABOR

COLABORE

Hemophilia Alliance

India - Mumbai

Año de designación del CIEHEMO: 2000