Notes from the Community, March 2021


Notes from the Community

World Federation of Hemophilia: Global Reach. Local Impact.
by Jennifer Laliberté – WFH USA National Director

Since 1963, we have worked to improve access to care for all people living with an inherited bleeding disorder, regardless of where they live. In collaboration with our national member organizations and healthcare providers in 147 countries, we support sustainable care by building capacity for diagnosis, treatment, and advocacy.

The WFH Guidelines for the Management of Hemophilia have been vital to achieving those objectives: cited over 1,000 times, the second edition remains our most widely accessed resource. The new edition published last August provides important updates and additions, including over 300 evidence-based recommendations to guide best practice. To further the promotion and implementation of these recommendations – and thanks to the support of the Hemophilia Alliance — we will also be releasing slides decks, narrated videos, and chapter snapshots to highlight key learnings. Keep on the lookout for these soon-to-be-released resources on the WFH website.

The World Bleeding Disorders Registry (WBDR) is another valuable tool to support clinical care and advocacy around the world. First launched in 2018, the registry now contains clinical data on over 7,400 people with hemophilia in 39 countries, and has provided communities in countries like Bangladesh and Kyrgyzstan with their first ever national registry. Upcoming plans include developing myWBDR, an app developed in collaboration with PROBE that will allow for easier collection of patient-reported outcomes.

2021 will see the launch of our ground-breaking Gene Therapy Registry (GTR). As we enter a new treatment era, this important initiative will help determine the long-term safety of gene therapies in people with hemophilia, with data collected either directly via the HTC or through linkages with existing national registries like ATHN. We look forward to sharing more information in the months ahead.

As members of our global community, you are an integral part of our vision of Treatment for All. We hope you will join us as we celebrate the strength and solidarity of our bleeding disorders family on World Hemophilia Day this April 17th. Encourage your community to join us on social media using the hashtags #WHD2021 and #WorldHemophiliaDay, or consider making a gift to support the WFH’s global mission at give.wfh.org/give-usa.

To learn more about our work and how you can get involved, contact us at info@wfhusa.org.


Also in this Issue…

Notes from Joe
· Imagine That

Legal Update
· Getting Out Your Message without Getting in Hot Water: HTC Marketing and the Grant Rules

Washington Update
· Please Register for the Alliance Virtual Hill Day!

Payer Update

Alliance Update
· Marketing and Operations Update
· Meeting Schedule for 2021