Treatment and care

The WFH contributes to setting standards of care globally by monitoring and communicating treatment-related safety and supply issues, by convening international multi-stakeholder meetings to address challenges in access to safe and effective therapy, and by providing up-to-date and accurate treatment-related information to our community.

The safety and supply of treatment products is a key concern for the bleeding disorders community. The WFH closely monitors product safety, supply, and access; issues advisories related to treatment safety and supply; and monitors the development and regulatory status of new and novel treatments.

TREATMENT GUIDELINES

The WFH works to provide the most up-to-date and evidence-based standards of care for the global bleeding disorders community. 

Guidelines for the Management of Hemophilia

The WFH Guidelines for the Management of Hemophilia, 3rd edition was developed by an international panel of expert healthcare professionals (HCPs) and people with hemophilia (PWH) and published in August 2020. The objective of the publication is to set the standard of care globally and work to ensure all HCPs and PWH have access to the latest and most up-to-date treatment recommendations, ultimately producing optimal health outcomes for PWH, minimizing harm, and reducing variations in clinical care globally.

The published guidelines and derived material can be found on the Treatment Guidelines Resource Hub.

Guidelines for diagnosis and management of von Willebrand Disease

These clinical practice guidelines for the diagnosis and management of von Willebrand disease (VWD) were developed in collaboration with the American Society for Hematology (ASH), the International Society on Thrombosis and Haemostasis (ISTH), and National Hemophilia Foundation (NHF) and published in 2021. These recommendations offer important guidance on prophylaxis, major and minor surgeries, heavy menstrual and postpartum bleeding, diagnostic thresholds, genetic testing, and much more. They constitute a valuable resource for clinicians and people with VWD in their shared decision making about individual care. They also form a solid foundation for the essential advocacy work to improve access to the recommended diagnostic techniques and treatment options in all countries.

The published guidelines and derived material can be found online at:

STATEMENTS AND ADVISORIES

WFH Statements and advisories are notices published by the WFH that relate to safety, supply, and access to treatment issues.

DISCLAIMER

These statements and advisories are provided for general information purposes only. The WFH does not engage in the practice of medicine and does not give medical advice. Under no circumstances does the WFH recommend any specific treatment for individuals. For medical diagnosis or treatment, the WFH recommends that individuals consult their physician or local hemophilia treatment centre (HTC).

Latest statements and advisories

Joint WFH statement - WFH, National Bleeding Disorders Foundation (NBDF)

WFH and NBDF statement on severe adverse event with marstacimab rebalancing agent for hemophilia

The World Federation of Hemophilia (WFH) and National Bleeding Disorders Foundation (NBDF) have been informed by Pfizer of a severe adverse event that occurred December 14 in an individual on prophylaxis with marstacimab (Hympavzi®) who had suffered a fatal thrombotic stroke after minor surgery. The individual with hemophilia A and active inhibitors was a participant in Pfizer’s marstacimab clinical trial program who had been on marstacimab prophylaxis at the standard maintenance dose (150 mg once weekly) for three years. The thrombotic event occurred during the long-term open label extension (OLE) study. Pfizer is actively gathering information to better understand the causality of the event. Marstacimab is not currently approved by regulatory authorities for use in hemophilia with inhibitors and remains under clinical investigation.

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WFH statement - EN

WFH statement on recent developments related to hemophilia therapies

Despite advancements in care, people with hemophilia (PWH) still face major challenges around the world. Lack of access to care means that two-thirds of the global hemophilia population lacks treatment. Even in higher income countries, treatment is burdensome and breakthrough bleeding occurs. While recent therapies have addressed some critical needs, and commercialized gene therapies for hemophilia have shown encouraging, yet variable, results, a cure remains distant for most PWH. Continued innovation is essential to ensure better care for the global hemophilia community.

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WFH SHARED DECISION MAKING TOOL FOR HEMOPHILIA TREATMENT

What is Shared Decision-Making?

Shared Decision-Making (SDM) is a process by which clinicians and patients work together to make treatment decisions based on clinical evidence that balances risks and expected outcomes with patient preferences and values. SDM helps patients feel prepared in the decision-making process.

The WFH Shared Decision Making Tool

The WFH SDM Tool is an interactive decision-support system designed to facilitate discussions regarding treatment options between people with hemophilia (PWH) A or B and/or caregivers and their healthcare team, leading to informed decision-making. 

The WFH SDM Tool provides a framework to guide PWH through the thought process regarding treatment goals and preferences, provides evidence-based and balanced education on expected outcomes by treatment class, and helps PWH navigate the complexities of the current treatment options.

FUTURE UPDATES

The WFH SDM Tool is now available for use in Dutch, English, French, German, Japanese, and Spanish —and even more languages as we move forward. The WFH SDM Tool is a living tool that will be updated with new evidence twice per calendar year. The cutoff dates are June 30 and December 31, with updates taking place in the following month(s). Any new evidence after these cutoffs will be included in the next update.

For more information on the WFH SDM Tool, contact us at [email protected].

WE WANT YOUR FEEDBACK

A three-month public stakeholder comment period will be open from August 1 to November 1, 2023. We encourage you to participate in this important process by completing a survey in the WFH SDM Tool. Take a few moments and let us know what you think!

WFH SDM Tool is supported by funding from:

WOMEN AND GIRLS WITH BLEEDING DISORDERS (WGBD) INITIATIVE

Women and Girls with Bleeding Disorders Initiative logo

The Women and Girls with Bleeding Disorders (WGBD) Initiative is designed to improve diagnosis and access to care for all WGBD and increase their recognition and visibility within the broader bleeding disorders community.

This will be achieved through capacity-building, awareness raising, and data collection.

The need

Women and girls currently only represent 4.5% of people identified as having hemophilia, instead of the expected 30%, as for one man with hemophilia, there are 1.6 somatic carriers. Approximately one in five women who suffer from heavy menstrual bleeding have an underlying bleeding disorder. Yet, bleeding disorder under-diagnosis remains very common. This is concerning, since WGBD are at increased risk for several conditions including anemia, bleeding during pregnancy and other types of bleeding issues. In addition, women and girls face greater barriers to access care in general due to period stigma, gender bias and sexism. All these factors contribute to the fact that WGBD are undiagnosed, underserved, and underrepresented in surveillance and medical databases.

Learn more about women and girls with hemophilia

Learn more about women and girls with hemophilia

WGBD Initiative goals

The WGBD Initiative aims to:

  1. Increase equitable access to diagnosis and care for WGBD
  2. Increase global awareness and foster collaboration on WGBD issues
  3. Increase data collection on WGBD

Program components

The Program is built around three key components.

The capacity building component aims to increase equitable access to diagnosis and care for WGBD by:

  • Increasing the knowledge of HCPs on comprehensive clinical management of WGBD
  • Increasing the capacity of NMOs to advocate for WGBD’s right to equitable access to care
  • Increasing the knowledge of HCPs and WGBD through peer-to-peer support and exchange

This will be achieved through educational conferences including the bi-annual WFH Global Summit on women and girls with bleeding disorders, and targeted training sessions, as well as the development and dissemination of educational resources. Targeted opportunities for WGBD to continue building their capacity will also be available every two years through the Susan Skinner Memorial Fund Scholarship (SSMF) program.

The awareness raising component aims to increase the recognition of WGBD by:

  • Enhancing WFH global action to raise awareness about WGBD worldwide
  • Strengthening the collaboration between WFH, civil society and other stakeholders interested in supporting WGBD
  • Promoting the engagement of WGBD in WFH programs

This will be achieved through communications campaigns to highlight the realities faced by WGBD, collaboration with other organizations, and the incorporation of WGBD perspectives into WFH programs and tools.

The Data collection component aims to increase access to data on WGBD by:

Enhancing capacity on collection and reporting data on WGBD among NMOs and HTCs and increasing the WFH’s data collection efforts on WGBD.

This will be achieved through the inclusion of additional questions regarding WGBD into the WFH Annual global survey, the promotion of the inclusion of more women and girls into the WBDR and the support of research and publications on WGBD.

To access more content about WGBD, please click here. For more information, contact the WFH at [email protected].

The WGBD Initiative is supported by funding from:

ONLINE CFC REGISTRY

The CFC Registry helps medical personnel identify available clotting factor concentrates (CFCs) and stay abreast of pharmaceutical company changes. The platform provides a wealth of easily accessible and actively updated data that can be used by healthcare professionals and officials, pharmacists, and people with bleeding disorders to inform their decision-making.

eLearning Platform

Did you know?

The WFH PACT Program is a 5-year initiative designed to improve outreach and diagnosis and increase access to sustainable care for people with inherited bleeding disorders.

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.