News
ABCs and IEPs
Living with a Bleeding Disorder
Students with bleeding disorders may qualify for an Individualized Education Program (IEP). With an IEP, and depending on students’ needs, a school…
Mental Health Mondays!
Health and Well Being, Living with a Bleeding Disorder
Join the Coalition for Hemophilia B every week for an ongoing series that features practical tools and calming moments to help you take…
Provider Webinar Focuses on Bone and Mental Health for Women
Health and Well Being, Living with a Bleeding Disorder, Women with Bleeding Disorders
Women with bleeding disorders need to be screened for anxiety/depression and bone health. A new webinar for healthcare providers discusses case studies…
New Name, Big Goals
Advocacy & Legislation, Living with a Bleeding Disorder
The Bleeding Disorders Research Collaborative (formerly the National Research Blueprint) is signaling a change from planning to action – all with the…
Protecting Access to Care
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Twenty-one states have filed suit to block implementation of the Marketplace Integrity Rule, arguing that it will create barriers to coverage and…
Why Aren’t People Choosing Gene Therapy?
Gene Therapy, Health and Well Being, Living with a Bleeding Disorder
At the turn of the 21st century, gene therapy was heralded as a possible “cure” for hemophilia. However, now that gene therapy…
Celebrating September: Awareness Highlights
Health and Well Being, Living with a Bleeding Disorder, Pain Management
September is filled with important observances that bring awareness to various causes. Join NBDF in celebrating Hispanic Heritage Month, Suicide Prevention Month, Pain Awareness Month,…
Women Bleed Too: Closing Gaps in Bleeding Disorder Care
Industry News & Research, Women with Bleeding Disorders
Women and girls with bleeding disorders face delays in diagnosis and care. Learn how research and community voices are changing the future…
Resources for Milwaukee County Residents Affected by Flooding
GLHF News
Milwaukee residents and organizations are coming to the forefront to aid communities impacted by severe flooding. Here are resources to help with…
Meet Emmett’s Dinos!
GLHF News
Register today for the Unite for Bleeding Disorders Walk, September 27 at the Milwaukee County Zoo! Cheri Bowman’s son, Emmett, was born in…
How the “One Big Beautiful Bill” Harms the Bleeding Disorders Community
Advocacy & Legislation
Federal cuts will disrupt access to lifesaving care for thousands in our community. Read about the projected impacts — and what you…
Research in Children and Adolescents with Inherited Bleeding Disorders
Industry News & Research, Living with a Bleeding Disorder
This session of the Research Journal Club explores the latest advances and challenges in research focused on children and adolescents with inherited…
Why Genetic Testing Matters for Girls at Risk for Hemophilia
Gene Therapy, GLHF News, Living with a Bleeding Disorder, Women with Bleeding Disorders
Research reveals that many at-risk girls aren’t getting tested, which may lead to missed diagnoses and delayed care. Source: National Bleeding Disorders…
Bleeding Disorder Self-Care and Self-Advocacy When You’re at College
Health and Well Being, Living with a Bleeding Disorder
Follow these tips to manage your condition while you’re away from home and on your own. Source: National Bleeding Disorders Foundation, August…
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 Guidelines
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…