Category: HFA News

Advocacy News: March 2024

Word From Washington Federal Agencies According to the latest KFF Medicaid Unwinding Enrollment Tracker, more than 19 million Americans have lost Medicaid coverage since states were allowed to resume eligibility verifications following the COVID-19 public health emergency (PHE). At least 70 percent of Medicaid terminations continue to be for procedural reasons (such as not returning […]

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: 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

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 […]

Takeda Issues Voluntary Product Withdrawal

Takeda today announced that it is conducting a voluntary market withdrawal for two product lots of 650 IU VONVENDI® [von Willebrand factor] in the U.S. Takeda announced that the withdrawal is being conducted out of an abundance of caution due to misprinted product labels with the incorrect expiration date. The expiration date printed on the […]

HFA Announcement to Community and Industry Partners

In response to the ever-evolving landscape and the need to adapt to new challenges, the Hemophilia Federation of America Board of Directors and staff are undertaking an organizational restructure.  As part of this process, there will be some necessary staff adjustments, including a reduction in force. While these decisions are never easy, they are essential […]

Statement: HFA and NBDF Address WHO Recommendations

Hemophilia Federation of America (HFA) and the National Bleeding Disorders Foundation (NBDF) are deeply concerned by the World Health Organization’s (WHO) recommendation of cryoprecipitate (pathogen-reduced and non-pathogen-reduced) in the 23rd Essential Medicines List (EML) for treatment for hemophilia.   With FVIII concentrates available globally, the inclusion of cryoprecipitate as treatment for hemophilia is an egregious, misguided […]