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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

  • Update on Smithsonian Institution Project to Archive Bleeding Disorders History

    Hemophilia Federation of America announced, in April of 2019, a partnership with the Smithsonian Institution to document the history of the bleeding disorders community, with a focus on the tragic experiences with contaminated blood, and we’re pleased to announce the first phase of the project is complete.   HFA began an initiative to collect artifacts and The post Update on Smithsonian Institution Project to Archive Bleeding Disorders History appeared first on Hemophilia Federation of America.

  • Advocacy News: February 2024

    Word From Washington State of the States The post Advocacy News: February 2024 appeared first on Hemophilia Federation of America.

  • Scholarship Recipient: Michael Potanin

    2023 HFA Educational Scholarship Johns Hopkins University, Maryland I am honored to have been chosen as a recipient of the HFA Educational Scholarship. This recognition provides immense support to me as I pursue my education and career goals. As a hemophiliac who has personally experienced the challenges of living with a genetic disorder, I am The post Scholarship Recipient: Michael Potanin appeared first on Hemophilia Federation of America.

  • Scholarship Recipient: Porus Pavri

    2023 HFA Educational Scholarship Rutgers University, New Jersey As an individual with hemophilia, my journey has been shaped by both challenges and determination. These experiences have propelled me towards pursuing a business major and setting ambitious future goals. I believe that the intersection of my personal circumstances and academic aspirations is a unique space where The post Scholarship Recipient: Porus Pavri appeared first on Hemophilia Federation of America.

  • Scholarship Recipient: Gabriella Macera

    2023 Eric Delson Memorial Scholarship Oregon Health and Science University, Portland I would like to express my gratitude to the Hemophilia Federation of America and its donors for this scholarship. It is inspiring that there are people such as yourselves that want to invest in my success. The honor of this award validates years of The post Scholarship Recipient: Gabriella Macera appeared first on Hemophilia Federation of America.