News
FDA Rare Disease Innovation Hub to Enhance and Advance Outcomes for Patients
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
by: Patrizia Cavazzoni, MD, Director, Center for Drug Evaluation and Research and Peter Marks, MD, PhD, Director, Center for Biologics Evaluation and…
Defining Gene Therapy for Patients
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
Gene therapy is a welcome treatment for patients, which has been anticipated for decades. But how do parents and patients discuss this…
Where is Your HTC?
Advocacy & Legislation, Living with a Bleeding Disorder
Do you need an HTC? A new HTC? Do you need to find one when you travel across the US? Check out the…
GLHF’s Wisconsin Bleeding Disorders Conference Celebrates Another Successful Year – Hosting More Than 50 Families!
GLHF News, Living with a Bleeding Disorder
GLHF’s annual Wisconsin Bleeding Disorders Conference, for people and families living with a bleeding disorder, was held June 7-9 at the Kalahari…
What May Be on the Horizon for Hemophilia Treatment?
Industry News & Research
Gene therapy research continues to evolve. As more information becomes available, the below may help you better understand gene therapy and shared…
Hemophilia Affects Everyone; What Are Some Truths About the Care Partner Journey?
Health and Well Being, Living with a Bleeding Disorder
Hemophilia truth time: hemophilia is a shared experience—affecting family, friends, and loved ones. In a global survey of more than 2700 participants,…
ERIN Initiative Champions Inclusivity in Inherited Bleeding Disorders
Health and Well Being, Living with a Bleeding Disorder
Discover how the European Rare & Inhibitor Network (ERIN) is breaking barriers and advancing inclusivity for those with inherited bleeding disorders. This…
For People with Bleeding Disorders, Adherence Is Still a Problem
Health and Well Being, Living with a Bleeding Disorder
Even as therapies for hemophilia have expanded and improved, the issue of not following treatment regimens as directed remains a major point…
Black Men with Hemophilia Have a Shorter Life Expectancy than White Men
Health and Well Being, Men with Bleeding Disorders
A researcher of disparities in hemophilia care discusses her findings and what’s still left to learn. by: James Langford In the early…
Calling All Walkers! The 2024 Unite for Bleeding Disorders Walk Is September 28! Register Your Walk Team Today and Learn About Some of This Year’s Great Prizes!
GLHF News
Last year as a community we raised $76,437! This year’s goal is $78,000 and we need your help to get there! Check…
Calling all Athletes! The Gettin’ in the Game Junior National Championship is in Henderson, NV Sept. 20-22.
GLHF News, Living with a Bleeding Disorder
CSL Behring will host the Gettin’ in the Game Junior National Championship (JNC) in Henderson, NV on September 20 – 22, 2024. Participants will…
In Loving Memory of Neil Frick, NBDF’s Senior Vice President for Medical Programs and Information
GLHF News, Industry News & Research
From the National Bleeding Disorders Foundation’s President and CEO, Phil M. Gattone, M.Ed. It is with profound sadness that we share the…
Product Update from Novo
Industry News & Research
Novo Nordisk sent a letter to NBDF sharing more information about the current product issue related to NovoSeven® RT and Novoeight ®….
Free Educational Videos on the use of Novel Non-Factor Therapies
Industry News & Research, Living with a Bleeding Disorder
The National Bleeding Disorders Foundation (NBDF) is pleased to announce the availability of a series of educational videos on the use of…
Learn About Clinical Issues in Women with Bleeding Disorders
Industry News & Research, Women with Bleeding Disorders
The National Bleeding Disorders Foundation (NBDF) is pleased to announce a series of educational videos on clinical issues in women, girls, and…
Study Provides New Data on Neurodevelopment in Younger Hemophilia Population
Industry News & Research
It has been several decades since the publishing of large U.S. studies of neurodevelopment and other cognitive functions in children and young…
Activity Explores Non-Factor Replacement Therapy in Hemophilia Care
Industry News & Research, Living with a Bleeding Disorder
The National Bleeding Disorders Foundation (NBDF) is excited to announce a new accredited educational opportunity for healthcare providers. This live/virtual program will…
Own Your Path
Living with a Bleeding Disorder
Take charge of your health care journey with the Own Your Path program! If you’re an adult on prophylaxis treatment for VWD…
New Study Suggests Prophylactic Treatment May Reduce “Brain Bleed” Risk for People with Hemophilia A
Industry News & Research
Results of a new study published in the Journal of Blood Medicine (JBM), indicate that people with hemophilia A (HA) who have…
Discover the New Steps for Living Website Coming Soon!
Health and Well Being, Living with a Bleeding Disorder
The National Bleeding Disorders Foundation (NBDF) is thrilled to announce the upcoming launch of the revamped Steps for Living website, your ultimate…
It’s Camp Season! Camp Klotty Pine is August 4-9! Register Today!
GLHF News
Camp Klotty Pine is a place of encouragement, mentoring, and education. It is a space that allows everyone to be uniquely themselves, breaking…
Huge Win for Advocacy Groups as People with Bleeding Disorders See Increased Equity and Access to Behavioral Health Facilities
Advocacy & Legislation, Health and Well Being
The Bleeding Disorders Substance Use and Mental Health Access Coalition, National Bleeding Disorder Foundation (NBDF), and Hemophilia Federation of America (HFA), are…
Bleeding Disorders Substance Use and Mental Health Access Coalition
Health and Well Being, Living with a Bleeding Disorder, Pain Management
The BD SUMHAC was created from tragedy. A young man with a bleeding disorder facing a substance use disorder was repeatedly denied…
What is “Health Equity”?
Advocacy & Legislation, Living with a Bleeding Disorder
Unfortunately, health inequities are a sad reality in the United States health care system. Together with the inheritable blood and bleeding disorders…