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. […]

Advocacy News: March 2024

facade of building

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). […]

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 […]

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 […]

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 […]

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 […]

Scholarship Recipient: Kayla Gregory

2023 HFA Medical Education Scholarship University of California, Davis I am planning to major in Biochemistry and Molecular Biology and be a part of a Division 1 swimming program at University of California- Davis. in the fall. I thoroughly enjoy studying chemical processes and with biochemistry, I get to examine the chemistry of the world. […]

Scholarship Recipient: Haylee Slonaker

2023 HFA Parent/Sibling Scholarship University of California, Santa Cruz Growing up in the desert, I love being outdoors. From hiking in the summer to watching the stars at night in the winter, I’ve always had a passion for the outdoors. It was not until recently that I realized I could go into a field where […]

Blog: Random Thoughts from a Venerable Hemophiliac 

At 73 and retired, I can look back on life, and wonder how I got to where I am.  Seventy-three is old. You appreciate social security, Medicare, pensions, and the occasional days where arthritis isn’t winning the joint battle.  You appreciate your high school girlfriend who became your wife of 52 years, your adult sons and […]

Novo Nordisk Announces Supply Shortage

medical supplies

Novo Nordisk today announced an important update about the Rebinyn®, Coagulation Factor IX (Recombinant), GlycoPEGylated 3000 IU vial size.  From Novo Nordisk: In May 2023, Novo Nordisk launched the Rebinyn® 3000 IU vial size, and the demand for this vial size has outpaced our expectations. This has resulted in a temporary shortage that will lead […]