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Events

 

Family Education Days

In the Spring/Summer of each year, The Lone Star Bleeding Disorders Foundation hosts regional Family Education Days. MORE…

 

Camp Ailihpomeh

 

UNITE for Bleeding Disorders Walks

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 Austin and the Valley. This year, we are excited to be a part of the UNITE for Bleeding Disorders Walk, for all bleeding disorders! MORE…

 

Texas Bleeding Disorders Conference

TBDC is a joint effort between the Lone Star Bleeding Disorders Foundation and the Texas Central Hemophilia Foundation, bringing over 800 people from all over the state of Texas together for a weekend of education, networking, and fun. 

News from HFA

  • Advocacy News: May 2024

    Word from Washington Federal Agencies CMS extends waiver flexibilities, reporting requirements for Medicaid “unwinding” redeterminations According to the latest KFF Medicaid Unwinding Enrollment Tracker,  nearly 23 million Americans have lost Medicaid coverage since states were allowed to resume eligibility verifications following the COVID-19 public health emergency (PHE). Nearly 70 percent of Medicaid terminations continue to The post Advocacy News: May 2024 appeared first on Hemophilia Federation of America.

  • Leading Advocacy Organizations Celebrate Federal Rule Strengthening Protections Against Disability Discrimination 

    The Bleeding Disorders Substance Use and Mental Health Access Coalition (BD SUMHAC), National Bleeding Disorder Foundation (NBDF) and Hemophilia Federation of America (HFA) are pleased to share that after advocacy from the bleeding disorders community, the U.S. Department of Health and Human Services (HHS), through its Office for Civil Rights (OCR), finalized a new rule The post Leading Advocacy Organizations Celebrate Federal Rule Strengthening Protections Against Disability Discrimination  appeared first on Hemophilia Federation of America.

  • Advocacy News: April 2024

    Word from Washington After one year, Medicaid coverage losses during “unwinding” continue to surpass worst fears According to the latest KFF Medicaid Unwinding Enrollment Tracker, more than 21 millionAmericans have lost Medicaid coverage during the first year after states were allowed to resume eligibility verifications following the COVID-19 public health emergency. There remains wide variation The post Advocacy News: April 2024 appeared first on Hemophilia Federation of America.

  • May is Hepatitis Awareness Month

    In 2001, the Centers for Disease Control and Prevention designated the month of May as Hepatitis Awareness Month to bring awareness and attention to those living with viral hepatitis. In the 1980s and ’90s, thousands of people with hemophilia contracted HIV and hepatitis C (HCV) from the contaminated blood supply transmitted by clotting factor products. The post May is Hepatitis Awareness Month appeared first on Hemophilia Federation of America.

  • FDA Approves One-Time Gene Therapy for Adults with Hemophilia B

    From Pfizer: Pfizer Inc. announced that the US Food and Drug Administration has approved BEQVEZ™ (fidanacogene elaparvovec-dzkt) for the treatment of adults with moderate to severe hemophilia B who currently use factor IX (FIX) prophylaxis therapy, or have current or historical life-threatening hemorrhage, or have repeated, serious spontaneous bleeding episodes, and do not have neutralizing The post FDA Approves One-Time Gene Therapy for Adults with Hemophilia B appeared first on Hemophilia Federation of America.