News
NBDF Statement on Passage of HR 1 – “One Big Beautiful Bill Act”
Advocacy & Legislation, Health and Well Being, Industry News & Research
This week, Congress passed a bill, the “One Big Beautiful Bill Act,” that will have widespread impacts on the bleeding disorders community…
Pfizer Announces Phase 3 Trial Results for Hemophilia/Inhibitor Therapy
Industry News & Research
HYMPAVZI™ (marstacimab-hncq) is FDA-approved for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adults and pediatric individuals 12…
NFRC Features Resources Supporting Joint Heath in People with Bleeding Disorders
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
Discover Resources on Bleeding Disorders and Joint Health Summer is now in full swing, with the sunny promise of more opportunities to…
Literature Review Reaffirms Clinical Relevance of Von Willebrand Disease Guideline
Industry News & Research
A comprehensive literature review was conducted to ensure that the von Willebrand disease guidelines were still clinically appropriate and informed by the…
National Research Blueprint Becomes Bleeding Disorders Research Collaborative
Industry News & Research
New name reflects community leadership and a shift from planning to action. The National Bleeding Disorders Foundation’s (NBDF) National Research Blueprint (NRB), launched…
Be Biopharma Announces First Hemophilia Patient Dosed with New Cell Therapy
Industry News & Research
BE-101 is engineered to insert the human factor IX (FIX) gene into primary human B cells and initiate the continuous production of…
Beware Healthcare
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
The Coalition for Hemophilia B has summarized threats to healthcare from the current administration. What’s at risk? Currently, more than 24 million…
Prophy Treatment Research is Promising
Living with a Bleeding Disorder
Roche announced positive data from its Phase I/II NXTAGE trial of NXT007, a next-generation investigational therapy intended as a prophylactic treatment option…
PBM Podcast
Health and Well Being, Living with a Bleeding Disorder
Listen to a podcast on the power of PBM — pharmacy benefit managers. First exposed in LA Kelley Communications’ issue of PEN…
HemoLife Podcast
Health and Well Being, Living with a Bleeding Disorder
This podcast, hosted by L.A. Aguayo, a man with hemophilia who is an elite body builder, encourages conversations among members of the…
GLHF’s Bleeding Disorders Conference Offered a Weekend of Connection and Community
GLHF News, Living with a Bleeding Disorder
Earlier this summer, families from across Wisconsin gathered at the Kalahari Resort in Wisconsin Dells for GLHF’s annual Wisconsin Bleeding Disorders Conference….
Camp Klotty Pine Counselor Spotlight – Meet Julia and Maria
GLHF News
Meet Julia Hometown: Janesville, WI How many summers have you been coming to Camp? This will be my 9th summer! What’s your…
What’s Next in Bleeding Disorders Care?
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
The National Bleeding Disorders Foundation’s 77th annual Bleeding Disorders Conference will take place from August 21-23, 2025. We hope you join us…
Get Ready for Camp Klotty Pine – August 3-8!
GLHF News
The countdown has begun, and the camp experience truly starts before campers even steps onto the bus. Preparing together can help your…
Congress Needs to Hear from You!
Advocacy & Legislation, Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
In conjunction with NBDF and other national partners, GLHF encourages you to take action now. Right now, US Senators are debating a…
Breaking Barriers in Bleeding & Thrombotic Disorders in Women
Living with a Bleeding Disorder, Women with Bleeding Disorders
The 2025 Research Journal Club brings together experienced researchers, new research fellows, and lived experience experts to explore critical topics in bleeding…
Factor X Deficiency: Understanding This Rare Bleeding Disorder
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Check out this guide to why the condition occurs, how to recognize symptoms, and what you can do to manage it.
What’s Hurting Your Mental Health and What You Can Do About It
Health and Well Being, Living with a Bleeding Disorder
These five factors can negatively affect you, especially if you have a chronic health condition.
NEJM Publishes Follow-up Data on Hemophilia B Gene Therapy Product
Gene Therapy, Industry News & Research
The New England Journal of Medicine (NEJM) recently published long-term follow up data on patients who have previously received the hemophilia B gene…
New Paper Features Hemophilia Gene Editing Lexicon
Gene Therapy, Industry News & Research
NBDF, ASGCT, and ISTH publish a new paper offering a standardized lexicon to guide communication on gene editing in hemophilia research and…
Wisconsin All Copays Count Coalition Urges Action on Cole’s Act
Advocacy & Legislation, Living with a Bleeding Disorder
Oregon, North Dakota, Indiana, and Vermont join 19 other states that have passed copay accumulator bans. As the national momentum to protect…
From Intern to Board President – Dave Amoroso Shares His Experience and Perspective
Advocacy & Legislation, GLHF News
by: Danielle Lennie Dave Amoroso took an internship position at Great Lakes Hemophilia Foundation (GLHF) in 1985 while attending Marquette University. “I…
Get with the Beats!
Health and Well Being, Living with a Bleeding Disorder
2025 Beats Music Application – Nashville, TN (July 16, 2025 – July 20, 2025) – Apply by June 4. Travel scholarships available!…
Legislative Update: AB173, SB203, Cole’s Act, Copay Accumulator Adjusters, PBMs
Advocacy & Legislation, GLHF News
The average annual cost of clotting factor therapies for a person with severe hemophilia is roughly $300,000. For patients with inhibitors, expenses…