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

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 […]

Word from Washington: January 2024

On January 16, the U.S. Department of Health and Human Services withdrew its appeal in the litigation over HHS’s copay accumulator adjuster regulation. Patient groups including HFA applauded this latest development in the lawsuit.  As a reminder, patient groups led by the HIV + Hepatitis Policy Institute had filed suit against HHS, challenging its 2021 […]

Takeda Issues Voluntary Product Withdrawal

medical supplies

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 […]

Word from Washington: December 2023

Mid-December, for many people, marked the close of the open enrollment period for health insurance plans that will provide coverage beginning January 1, 2024. Preliminary data shows that enrollment in  Affordable Care Act (ACA) Marketplace coverage during the open enrollment period continued to grow at a record-breaking pace. The federal government projects that over 19 […]

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 […]

State of the States: Winter 2023

building facade

Coverage losses during Medicaid “unwinding” continue to exceed worst fears  More than 12.5 million Americans have lost Medicaid coverage nationwide during the “unwinding” of the COVID-era continuous coverage requirements, according to the most recent data released by KFF.    The U.S. Department of Health and Human Services (HHS) allowed state Medicaid programs to resume eligibility determinations […]