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Resources

 

Additional Resources

 

The National Hemophilia 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

  • Word from Washington: May 2023

    Lawmakers in May devoted close attention to the role that pharmacy benefits managers (PBMs) play in our health care system.  PBMs are middlemen that create and administer drug formularies on behalf of health insurers, self-insured employers, Medicaid, and other payers. PBMs choose which drugs a plan will cover, negotiate drug prices on behalf of payers, The post Word from Washington: May 2023 appeared first on Hemophilia Federation of America.

  • Pfizer Announces Positive Results from Hemophilia A and B Trial

    Pfizer Inc. today announced their Phase 3 BASIS clinical trial evaluating marstacimab has met its primary endpoints, having demonstrated statically significant and clinically meaningful effects. Marstacimab, a novel, investigational anti-tissue factor pathway inhibitor (anti-TFPI) being studied for the treatment of hemophilia A or B for people without inhibitors to Factor VIII (FVIII) or Factor IX The post Pfizer Announces Positive Results from Hemophilia A and B Trial appeared first on Hemophilia Federation of America.

  • FDA Finalizes Blood Donor Eligibility Guidance

    On May 11, 2023, the U.S. Food and Drug Administration released final guidance providing recommendations for evaluating blood and plasma donor eligibility using individual risk-based questions. Consistent with FDA’s January 2023 proposed guidance, the final guidance eliminates time-based donation deferrals and screening questions specific to men who have sex with men (MSM) and women who have The post FDA Finalizes Blood Donor Eligibility Guidance appeared first on Hemophilia Federation of America.

  • FDA issues response to Novo Nordisk’s request for concizumab approval

    Recently Novo Nordisk received a Complete Response Letter from the Food and Drug Administration for concizumab. Concizumab was submitted for regulatory approval in the U.S. for the treatment of hemophilia A and B with inhibitors in August 2022. In the letter, the FDA requested additional information related to the monitoring and dosing of patients to The post FDA issues response to Novo Nordisk’s request for concizumab approval appeared first on Hemophilia Federation of America.

  • The HELP Copays Act moves forward – now in the Senate as well as in the House 

    Protections for people who rely on copay assistance have been a top priority for HFA and many other patient groups for several years. That effort took a big step forward in April with the introduction of a first-ever Senate version (S. 1375) of the HELP Copays Act.   Sponsored by Sens. Kaine, Marshall, Markey, and Ernst, The post The HELP Copays Act moves forward – now in the Senate as well as in the House  appeared first on Hemophilia Federation of America.