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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

  • WFH Gene Therapy Registry: now live!

    The World Federation of Hemophilia (WFH) has developed a registry to monitor the long-term safety and efficacy of gene therapy for people with hemophilia: the WFH Gene Therapy Registry (GTR). The launch of the WFH GTR coincides with the first approvals of gene therapy for hemophilia by both the United States Food and Drug Administration (FDA) and the European Medicines Agency (EMA). The post WFH Gene Therapy Registry: now live! appeared first on Hemophilia Federation of America.

  • HFA & NHF Respond to New Blue Cross Blue Shield of Tennessee Formularies

    On January 1st, Blue Cross Blue Shield of Tennessee (BCBST) implemented formularies for their health plans (individual, small group, and large group) that remove 17+ bleeding disorders treatments from coverage. These exclusions threaten the health of potentially hundreds of Tennesseans who live with inherited blood or bleeding disorders. Patients who have been stable on their The post HFA & NHF Respond to New Blue Cross Blue Shield of Tennessee Formularies appeared first on Hemophilia Federation of America.

  • Dear Addy: Pharmacy Choice

    A community member writes in about their struggles with a friend who is pressuring them to switch to the specialty pharmacy that they work for. Addy share tips with writer as how to try to both keep their friendship and their pharmacy. The post Dear Addy: Pharmacy Choice appeared first on Hemophilia Federation of America.

  • State of the States: Q4 2022

    States win authority to restart Medicaid eligibility determinations in April The omnibus spending legislation passed late in the year by Congress will let states resume Medicaid eligibility determinations in April 2023, even if the Administration decides to continue the COVID-19 public health emergency (PHE) past that time. The National Association of Medicaid Directors (NAMD) had The post State of the States: Q4 2022 appeared first on Hemophilia Federation of America.

  • Word from Washington: December 2022

    On December 23rd, Congress passed a $1.7 trillion year-end spending package that averts a government shutdown and funds the government through September 2023. The 4,000+ page omnibus bill contains numerous important health provisions affecting Medicaid, telehealth, the accelerated approval pathway for new drugs, and more. The legislation sets a date (April 1, 2023) for the The post Word from Washington: December 2022 appeared first on Hemophilia Federation of America.