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Resources

 

Additional Resources

 

The National Bleeding Disorders Foundation is dedicated to finding better treatments and cures for bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. Click the following links to visit specific pages within NHF’s website:

The Hemophilia Federation of America is a national nonprofit organization that assists and advocates for the bleeding disorders community.  Their vision is that the bleeding disorders community will remove all barriers to both choice of treatment and quality of life.

Apply for the 2022 LSBDF/HFA Symposium Scholarship here.


World Federation of Hemophilia: An international not-for-profit organization dedicated to improving the lives of people with hemophilia and related bleeding disorders. They have developed a collection of Toolkits for many stages of life. Download informational pages and tools that you can share with teachers, ER staff, and more.


Committee of Ten Thousand: A grass-roots, peer-led, education, advocacy and support organization for persons with HIV disease.  The majority of their constituency is persons with hemophilia who contracted HIV/AIDS from tainted blood products.


Patient Notification System: A free, confidential, 24-hour communication system providing information on plasma-derived and recombinant analog therapy withdrawals and recalls.


Medic Alert Foundation: The original medical ID company that provies 24/7 emergency services.


American Medical ID: Medical ID company partnering with LSBDF to give patients 10% off their purchase and gives 10% back to the Chapter. Get code here.


LA Kelley Communications (PEN Newsletter): Founded in 1990 with the belief that any individual facing hardship, adversity or challenges-when given the right tools-can overcome, triumph, and even grow stronger in character and confidence.


Patient Services, Inc.: A non-profit organization based in Virginia, that has been expanding its effort to help patients with chronic illnesses pay for rising drug costs.


FDA’s Blood Products Hotline: Provides information for patients, and supports programs specifically designed to help ensure that patients’ voices are reflected in the regulatory decision making process.


Foundation for Women and Girls With Blood Disorders: Provides a wealth of information for women and girls dealing with bleeding disorders. Diagnosis, treatment, and care information all at your fingertips.

 

Scholarships

There are a number of educational scholarships available for people with bleeding disorders and their children, parents, partners, spouses and siblings.  HANDI has compiled a list that you can view at the NHF website by clicking here.

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.