National Hemophilia Foundation - for all bleeding disorders

The King Years: A Legacy Continues

The family of George King reflect on their longtime involvement with the foundation, and how their personal connection to the blood/bleeding disorders community has inspired their work.

Government Relations Update - May 2023

Federal  Updates:

Pfizer Highlights Phase 3 Trial Results of Marstacimab

Pfizer has announced positive results from their global phase 3 BASIS clinical study of marstacimab, the company’s investigational, subcutaneous therapy that targets an anticoagulant protein known as tissue factor pathway inhibitor (TFPI).

Announcement from NHF CEO and President

Dear National Hemophilia Foundation Community, Staff and Friends,

It is Family: A Conversation with Saylor Behrens

When Saylor Behrens' biology professor told her class that hemophilia is the result of incest, she grew angry. She knew better. Her younger brother, Wyatt, has hemophilia A.

It wasn't just the false narrative being spread that made her indignant- it was the sheer lack of awareness about hemophilia that morphed her brother's bleeding disorder into a scary, incredibly rare condition that could be brushed off.

Get to Know the Nevada Chapter with Jacob Murdock

Every day, chapters across the country work with the blood and bleeding disorders community around them. Since 2021, Jacob Murdock has served as Chapter Executive Director in Nevada. He took time out of his busy schedule to tell us why loves the Nevada Chapter.

How long has your Chapter been serving the community?

We were founded as the Hemophilia Foundation of Nevada in 1990. We became a national chapter of NHF in 2011. The chapter was founded by Renee Paper, a nurse and a pioneer in the treatment of women with bleeding disorders.

Rare Disease Fellowship Program Now Accepting Applications!

The Rare Diseases Diversity Coalition (RDDC) is currently seeking applicants for its 2023 Rare Disease Fellowship Program, which is aimed at inspiring the next generation of the medical workforce to work in the rare disease space and achieve greater health equity for people of color living with rare diseases.

The Fellowship allows rare disease organizations to collaborate with fellows to better understand the health impacts of that disease on communities of color. In addition, the Fellow will gain a greater awareness of the challenges of living with rare diseases

New MASAC Documents Approved on Physical Therapy, Gene Therapy Readiness, Vaccine Guidance, and Treatment

NHF’s Medical and Scientific Advisory Council (MASAC) recently issued four new documents, which are now available for easy access.

Updates on Generic Desmopressin Product

In July 2020 Ferring Pharmaceuticals suspended manufacturing of the nasal spray STIMATE®, a popular product used to treat certain bleeding disorders. The suspension, and subsequent pharmacy level recall, were in response to a packaging seal issue that caused evaporation, a potential hazard to patients who could be exposed to dangerously high concentrations of the product’s active ingredient desmopressin acetate.

MLOF Genotyping Project Informed Inhibitor Risk

Between 2013-2017, the “My Life Our Future” (MLOF) project offered eligible individuals with hemophilia free genotyping, which is historically hard to access, expensive, and not covered by insurance.