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UNITE for Bleeding Disorders Walks

We are so excited to host our Walks in person again in 2022!

Hill Country Walk – October 22, 2022

Houston Walk – October 15, 2022

By participating in the Unite Walk, you are supporting families with bleeding disorders in many ways.  Funds raised support educational programs to help them manage their bleeding disorder, advocacy efforts to improve access to care, and national research initiatives.  Your donation truly makes a difference!

The Lone Star Bleeding Disorders Foundation was one of five inaugural sites of the National Hemophilia Foundation’s Hemophilia Walk Program in 2008. It started in Houston, and has grown to two events, including the Hill Country.  It is a family-friendly day of fun, exhibits, games, photo booths, music, and more!

 

Because of the generous support of our sponsors and supporters since 2008, The Lone Star Bleeding Disorders Foundation has:

  • Raised awareness of bleeding disorders such as Hemophilia and von Willebrand Disease, hosting over 5,000 walkers, many of who have never heard of bleeding disorders
  • Moved into spacious new office space
  • Began programs specific to our Women/Girls, Teens, and Hispanic Community
  • Make a $10,000 donation to the Judith Graham Pool Fellowship Program at the National Hemophilia Foundation, supporting researchers and doctors finding better treatments and a cure for bleeding disorders.
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News from HFA

  • Word from Washington: November 2022

    Midterm elections are mostly wrapped up as November draws to a close. The race between Sen. Raphael Warnock and Herschel Walker heads to a runoff in early December, but regardless of the outcome in that contest, control of the U.S. Senate remains – narrowly – with the Democrats. Control of the House of Representatives, by The post Word from Washington: November 2022 appeared first on Hemophilia Federation of America.

  • State of the States: Fall 2022

    In this edition of State of the States, South Dakota votes to expand Medicaid, Oregon receives landmark approval to provide continuous Medicaid coverage for young children, and Delaware joins 14 other states in protecting copay assistance for consumers. Midterm elections result in little change in partisan control of state legislatures while states race to prepare for the looming end of the COVID public health emergency and the prospect of mass Medicaid terminations. The post State of the States: Fall 2022 appeared first on Hemophilia Federation of America.

  • 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® The post Press Release: First-Ever Gene Therapy Approved for Hemophilia B appeared first on Hemophilia Federation of America.

  • 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 The post HFA Statement on FDA Approval of First-Ever Gene Therapy for Hemophilia B appeared first on Hemophilia Federation of America.

  • BioMarin Investigational Gene Therapy Updates

    An update for the hemophilia community from BioMarin regarding a previously reported serious adverse event in the ongoing hemophilia A gene therapy [valoctocogene roxaparvovec, BMN 270] Phase 3 study that was deemed, by the Independent Data Safety Monitoring Committee and the company, very unlikely to be related to the investigational therapy. Clinical Development Program Update The post BioMarin Investigational Gene Therapy Updates appeared first on Hemophilia Federation of America.