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,…
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…
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…
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….
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…
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.
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…
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!…
How Do You Best Learn About Your Bleeding Disorder?
Health and Well Being, Living with a Bleeding Disorder
There are many ways to learn, and to learn about your bleeding disorder. Our society, though, is biased toward visual learning, because…