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Attend and/or donate to Casino Night, Hemophilia Walk, or make a general donation to the Lone Star Bleeding Disorders Foundation. Funds raised go towards each of our programs, Camp Ailihpomeh, Texas Bleeding Disorders Conference, and our B’Leaders Teen Program. Ask your company’s personnel department if they participate in employee matching and double your donation. Donate

News from HFA

  • 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.

  • Advocacy News: March 2024

    Word From Washington Federal Agencies Supreme Court Congress State of the States Oregon becomes first state in 2024 to pass protections against copay accumulator adjusters. Oregon Governor Tina Kotek (D) signed legislation unanimously passed by the House and Senate that protects consumers in state-regulated health plans from harmful and discriminatory copay accumulator adjuster programs (CAAPs). The post Advocacy News: March 2024 appeared first on Hemophilia Federation of America.