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Texas Bleeding Disorders Conference

TBDC is a joint effort between the Lone Star BDF and Texas Central Texas Central Bleeding Disorders, bringing over 800 people from all over the state of Texas together for a weekend of education, networking, and fun. Educational sessions are available for every step of life with a bleeding disorder. A fun Final Night event wraps up the weekend, with activities for the whole family.  To register online for the 2022 Conference to be held July 29-31 at the JW Marriott Hill Country Resort in San Antonio, please click here.  https://lonestarbleedingdisorders.org/wp-admin/post.php?post=1518&action=edit&lang=e

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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.