Notes from the Community, Spring 2022

Notes from the Community

Hemophilia Alliance Foundation Awards 2022 Project/Patient Assistance Grants!

Thank you to all of the organizations that applied for a Hemophilia Alliance Foundation (HAF) Project/Patient Assistance Grant! This year, we are proud to announce that we awarded over $500,000 to 58 organizations in the inherited bleeding and thrombotic disorders community. Congratulations to all of our recipients!

These Project/Patient Assistance Grants will directly support essential patient-centered programs in the community, including educational and advocacy events, patient assistance programs, travel grants to national and local meetings, and much more. We are thrilled to see the creativity and collaboration in many of the grant applications.

If you missed this grant cycle, please remember to mark your calendars for early December, when the Project/Patient Assistance Grant applications are released annually. Applications are due at the end of January. For those who are interested in applying for HAF’s Innovation Grant (up to $50,000), applications will be available in April 2022. More information will be announced soon.

Want to be notified when the next HAF grant application cycle is open? Please click here to add your name and email address so that we can add you to the HAF listserv. If you would like to make sure that you, or someone else in your organization, is part of our listserv, then please make sure they complete this form!

Any feedback for us? We continue to try to improve our grant guidance and application form. We’d love to hear your feedback. Please fill out this anonymous survey by clicking here.

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

To learn more about our work and how you can get involved, contact us at

Also in this Issue…

Notes from Joe
· “If not us, who? If not now, when?” – John F. Kennedy

Legal Update
· 340B Program Developments

Washington Update
· Recap of the Alliance Hill Day

Payer Update
· HANS Signs 6th Payer Contract!

Alliance Update
· Alliance Seeking Board Nominations
· Recap of the Linda Gammage Social Work Conference

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