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…
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…
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…
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…
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…
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…
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…
Gene Therapy Candidates Face ‘Once in a Lifetime’ Choice
Gene Therapy, Health and Well Being, Living with a Bleeding Disorder
People with hemophilia considering gene therapy are wrestling with concerns including the cost of treatment and variations in results. You only get…
Get to Know Bleeding Severity Levels for Hemophilia
Living with a Bleeding Disorder
Learn how mild, moderate, or severe hemophilia influences lifestyle choices and medical care. Your hemophilia doesn’t define who you are. But it…
New Study Reveals That Age Affects von Willebrand Disease Diagnosis
Health and Well Being, Living with a Bleeding Disorder, Men with Bleeding Disorders, Women with Bleeding Disorders
The findings could help further define VWD and address current challenges in treatment. The age that a person is first tested for…
How to Keep Summer Activities Safe for Kids with Bleeding Disorders
Health and Well Being, Living with a Bleeding Disorder
Learn why a popular piece of backyard play equipment is riskier than you might think. It’s summertime, and kids are out of…
First Sickle Cell Patient to Receive Gene Therapy Featured in NYT
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
Sickle cell disease is linked to an abnormality in the hemoglobin protein, which normally helps carry oxygen throughout the body via red…
A New Review on Primary Immune Thrombocytopenia
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
A new review published in the European Journal of Haematology describes the challenges inherent in managing both bleeding and excessive clot risk…
May is Mental Health Awareness Month
Industry News & Research, Living with a Bleeding Disorder
This month HANDI offers resources that support mental well-being and connect the bleeding disorders community with timely, practical, and readily accessible information.
NBDF Supports WFH Statement on ISTH Hemophilia Treatment Guidelines
Industry News & Research, Living with a Bleeding Disorder
The NBDF concurs with WFH’s assessment that the proposed guidelines risk setting hemophilia treatment back 30 years. The National Bleeding Disorders Foundation (NBDF) echoes…
P2C Announces Partnership to Support Development for Sickle Cell Disease
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Pathway to Cures (P2C) announced its collaborative partnership with Afimmune to support the development of Epeleuton as a potential therapeutic for Sickle Cell Disease…
FDA Approves Second Hemophilia B Gene Therapy Product
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
The U.S. Food and Drug Administration (FDA) has approved BEQVEZ™ (Pfizer, Inc.), a new hemophilia B gene therapy product. It is designed with…