Category: HFA News

HFA Welcomes Dan Kelsey as Chief Executive Officer

Experienced executive brings outcome-driven leadership to the national nonprofit patient advocacy group.  WASHINGTON, DC, April 12, 2023 – The Board of Directors of Hemophilia Federation of America (HFA) unanimously selected Dan Kelsey as HFA’s new Chief Executive Officer (CEO) on April 7, 2023. Dan will join the HFA team on Wednesday, April 12 and attend […]

Finding Strength Through Diversity

This Black History Month, HFA asks our community to think back on the family members they’ve loved and the moments they created. We ask our community to think on the diversity of our community, the stories we’ve shared, and the people of color who helped make the bleeding disorder community as strong as it is […]

Summary of HFA’s Convening for Research on Women with Bleeding Disorders

On October 28, 2022, thirty-two bleeding disorders (BD) community stakeholders met to learn about BD in women, discuss gaps in care and research for women, and read, discuss, and adopt the research agenda for women with BD created through Hemophilia Federation of America’s Females in Research Sharing and Translation (FIRST) project. Twenty-four stakeholders met in […]

Press Release: First-Ever Gene Therapy Approved for Hemophilia B

FOR IMMEDIATE RELEASE  First-Ever Gene Therapy Approved for Hemophilia B  National patient advocacy organization issues formal statement.  WASHINGTON, D.C., Nov. 23, 2022—Hemophilia Federation of America (HFA), a national advocacy leader for patients with bleeding disorders, released a statement considering recent news that the U.S. Federal Food and Drug Administration (FDA) approved CSL Behring’s (CSL) HEMGENIX® […]

HFA Statement on FDA Approval of First-Ever Gene Therapy for Hemophilia B

Five years ago, Hemophilia Federation of America articulated a broad vision that includes advocating for improved care and quality of life for those affected by bleeding disorders. Hemophilia imposes many burdens: painful and unpredictable bleeding; joint damage or other serious long-term complications; onerous treatment regimens; and numerous other constraints on personal and family life. HFA […]

An “Unspeakable” tragedy brings community together

Over 250 people registered for HFA’s first webinar in a 4-part series to talk about the tainted blood tragedy with Robert C. Cooper, Blood Brother, writer, director, executive producer, and owner of Mezo Entertainment with over 400 episodes on television who is best known for his work on the series “Stargate” and now “Unspeakable.” Based on […]

Females in Research Sharing and Translation (FIRST) Project

Inherited bleeding disorders, such as hemophilia and von Willebrand disease, have long been under-recognized as causes for bleeding in females. Part of the problem with this under recognition has been the lack of opportunities for female engagement in research related these bleeding disorders. Through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington engagement award, the […]

HFA names Barbra Kavanaugh as interim CEO

HFA is pleased to announce the hiring of Barbra Kavanaugh, a seasoned non-profit business executive, as Interim CEO.Barbra Kavanaugh has served as an interim executive in several metro DC non-profit organizations, after decades as a leader in both non-profit and public sectors. She is also the Director of the Interim Executive Network "The most important […]

HFA Responds to Supreme Court’s Decision Overturning Roe v. Wade

At Hemophilia Federation of America, our bedrock principle is and always will be access: access to all safe and effective care and treatments for bleeding disorders, as well as access to the quality coverage that pays for such care. Reproductive care is essential to the health of all women – and is particularly important to […]

HFA Welcomes Our Summer 2022 Interns to Washington, DC

HFA is proud to welcome our 2022 Policy & Government Affairs Interns to Washington, DC for the summer. Our interns work about 30-35 hours a week in our DC offices and conduct research and analysis to help create educational resources on a variety of issues related to bleeding disorders. Other responsibilities may include attending relevant […]