News

Changes to Medicaid could affect access to coverage, treatment, infusion services, and specialty care for some people with hemophilia. The Coalition for…

RareAF: Advocacy & Facts is a podcast created to serve the rare disease community through education, advocacy, and real conversation. Sponsored by…

The first serious efforts to develop long-acting subcutaneous preventive treatments for VWD are taking place. VGA039 is a subcutaneous antibody designed to…

Novo Nordisk’s “Mim8” (denecimig) is an investigational bispecific antibody that mimics activated factor VIII. According to findings from the multinational randomized, Phase…

Fibrinogen deficiency is an ultra-rare bleeding disorder, and now NBDF has a publication to help people with this condition gain a deeper…

The new indication for HYMPAVZI® (marstacimab-hncq) broadens access to this once-weekly non-factor prophylactic therapy that targets TFPI to improve clotting and reduce bleeding…

The new rule states that having a “serious or complex medical condition,” such as bleeding disorder, will no longer automatically exempt a…

A new MASAC recommendation states that all people with an inheritable bleeding disorder, regardless of sex, age, or bleeding disorder severity, be…

In this webinar, Ben Samelson-Jones, M.D., Ph.D., a pediatric hematologist at Children’s Hospital of Philadelphia, shared research his team is doing to…

Takeda has updated the information for how long the these treatments will be available for patients who are still using these therapies….

As fewer clinicians enter the field of benign hematology, learn how the NBDF-Takeda Clinical Fellowships are working to strengthen the pipeline of…

Hemophilia A patients with life cases. Together, we will try to explore a compelling question: can two individuals with very different experiences…

CSL Behring has notified the hemophilia B community of a temporary global stockout of Hemgenix. This situation is not related to the…

As hemophilia treatments continue to roll out that are different than traditional factor replacement, they can offer more promising treatment but can…

Acquired hemophilia usually affects people in their 70s and 80s without warning. Here’s what you need to know. National Bleeding Disorders Foundation,…

Anti-TFPI treatments can help people with hemophilia A or B — with or without inhibitors — to better control bleeding. Source: National…

Advances include improved access to prophylaxis, multiple subcutaneous drugs in development, and research looking at better ways to personalize treatment. Source: National…

Dear Hemophilia B Community, We are writing to share an important update on the availability of HEMGENIX® (etranacogene dezaparvovec-drlb). CSL is currently experiencing…

Good news for the bleeding disorders community in the House of Representative’s FY26 Labor, Health and Human Services appropriations bill, which included…

The current coverage environment can create challenges for individuals seeking to explore gene therapy as a potential treatment option, as well as…

Great Lakes Hemophilia Foundation (GLHF) grieves the recent loss of Dr. Lynn Malec, a beloved Wisconsin Hematologist. Her life and work profoundly…

Certain common “natural” remedies can interfere with your body’s ability to clot. Source: National Bleeding Disorders Foundation, HemAware, February 2026

(Editors note: January 22, 2026. Following publication of this joint statement from the National Bleeding Disorders Foundation (NBDF) and the World Federation…

Good news: the House has reintroduced the HELP Copays Act, aimed at ending copay accumulator adjustor programs and copay maximizers. Learn how…