À propos
Actions
Données et outils
Évenements
Actualités
WFH statement - EN

Communiqué de la FMH sur le conflit en Ukraine

La FMH tient à exprimer toute sa solidarité avec la communauté des troubles de la coagulation et toutes les personnes actuellement affectées par le conflit en Ukraine.

Aussi disponible en : English

Nous savons que les communautés locales des troubles de la coagulation sont actuellement aux prises avec des difficultés inédites, et nos équipes surveillent de très près la situation sur place pour aider au mieux les personnes touchées. Cela passe notamment par une collaboration avec les organisations nationales membres (ONM), les centres de traitement de l’hémophilie (CTH) et d’autres acteurs en Ukraine, ainsi que dans les pays voisins touchés par le conflit. Nous travaillons actuellement à trouver le meilleur moyen de livrer les dons de facteur et à apporter notre aide là où elle est nécessaire, pour que les personnes atteintes d’un trouble de la coagulation continuent d’avoir accès aux soins. Nous vous tiendrons informé·es sur les actions de la FMH pour soutenir notre communauté. Au nom de toutes les équipes de la FMH, nous espérons que la paix sera bientôt de retour.

Si vous souhaitez faire un don pour soutenir la communauté des troubles de la coagulation en Ukraine et dans les pays touchés, cliquez ici et précisez « Ukraine » dans le champ « Commentaire ».

We’ve accomplished a lot this year, we need your help to continue strong.

Would you like to read more about similar articles?

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.

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].

Outils d’évaluation des capacités fonctionnelles

Les informations pertinentes recueillies dans le Registre mondial des troubles de la coagulation (RMTC) comprennent des données démographiques, des résultats cliniques et thérapeutiques, des paramètres concernant le fardeau de la maladie et les résultats déclarés par les patients eux-mêmes.

Dans son questionnaire élargi de collecte de données, le RMTC intègre 5 outils d’évaluation des capacités fonctionnelles :

Ensembles de données du RMTC sur l'hémophilie

Ensemble minimum de données du RMTC

L’Ensemble minimum de données du RMTC rassemble les informations de base (données démographiques, diagnostic, symptômes et traitements) collectées auprès des patients ayant accepté de participer au RMTC.

Ensemble élargi de données du RMTC

L’Ensemble élargi de données du RMTC correspond à un plus grand nombre d’informations collectées que celui de l’Ensemble minimum de données (données démographiques, diagnostic, symptômes, traitements et fardeau de la maladie). Disponible depuis mars 2019, l’Ensemble élargi de donnée du RMTC peut être utilisé par les Centres de traitement de l’hémophilie pour collecter des données plus détaillées sur les patients ayant accepté de participer au RMTC.