News
Know Who Represents You
Advocacy & Legislation
Your voice matters! It’s important that policymakers, elected officials, and other legislative staff hear from people with bleeding disorders in order to…
The Parent-Teacher Relationship
Health and Well Being, Living with a Bleeding Disorder
It’s normal for anyone to be concerned at the thought of a child with hemophilia in the classroom, but it can especially…
Healthy Living Items Assistance
Health and Well Being, Living with a Bleeding Disorder
Healthy Living Items Assistance helps individuals in the bleeding disorders community with the cost of medically necessary items that are not affordable…
Investigational T-Cell Therapy for Hemophilia A Inhibitors Receives Orphan Drug Designation
Industry News & Research
Orphan drug designation is awarded to therapies designed to treat rare diseases affecting fewer than 200,000 people in the United States. The…
GLHF’s Unite for Bleeding Disorders Walk Exceeds Expectation
GLHF News
GLHF’s Unite for Bleeding Disorders Walk was a great success with year, surpassing our goal by 7%, earning $74,417. The event included…
Gene Therapy in Hemophilia: Come Find Out What All the Buzz is About
GLHF News, Industry News & Research
From Curiosity To Eligibility And Beyond! Gene therapy has arrived! Join us for a one-hour presentation to hear how gene therapy is…
Depression, anxiety prevalent among hemophilia patients: Study
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder, Men with Bleeding Disorders
Analysis focused on 90 men with hemophilia A and B in Turkey by Lindsey Shapiro, PhD | September 15, 2023 About a quarter (24.4%) of…
Court Rules in Favor of Patients Regarding Copay Accumulator Adjustor Programs
Advocacy & Legislation, Living with a Bleeding Disorder
In a major victory for patients who depend on prescription drugs, Judge John D. Bates of the U.S. District Court for the…
Paper Highlights Treatment for Ultra-Rare Type 1 Plasminogen Deficiency
Industry News & Research
Type 1 plasminogen deficiency, also known as hypoplasminogenemia, is a very rare genetic disorder. A recent publication in the journal Haemophilia, represents a…
Learn More About Patient Assistance Programs
Advocacy & Legislation, Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
There are several programs and resources designed to assist individuals and families grappling with the financial burden of living with an inheritable…
Study Finds Men with Hemophilia Have Higher Rates of Depression, Anxiety, and Obesity than the General U.S. Male Population
Health and Well Being, Men with Bleeding Disorders
Hemophilia is a rare, inherited bleeding disorder in which the blood does not clot properly. Blood contains many proteins called clotting factors that…
Five Ordinary Items That Are Unique to Our Hemophilia Home
Living with a Bleeding Disorder
by: Alliah Czarielle Living with hemophilia entails some interesting household items In the hustle and bustle of daily life, we often overlook the…
Gynecologists Have Significant Part to Play in Shrinking Diagnostic Gaps
Industry News & Research, Living with a Bleeding Disorder, Women with Bleeding Disorders
A new commentary, “Closing the Diagnostic Gap in Adolescents and Young Adult Women with Bleeding Disorders,” published in the August issue of…
In Memory of David Linney
GLHF News
Our community is small, but the challenges of life can be so big for those living with a bleeding disorder. Individuals and…
Statement: HFA Responds to Latest Gene Therapy Announcement
Gene Therapy, Industry News & Research
Yesterday, the U.S. Food and Drug Administration approved Roctavian (valoctocogene roxaparvovec), the first gene therapy for hemophilia A. This new treatment option, for the treatment of…
UPDATE: Takeda to Voluntarily Replace Certain BAXJECT® II Reconstitution Devices
Industry News & Research
Takeda, in agreement with the U.S. Food and Drug Administration (FDA), has decided to voluntarily replace BAXJECT® II reconstitution devices produced by…
Two New MASAC Documents Focus on Access to Substance Use Facilities and Treatment Recommendations
Health and Well Being, Industry News & Research
MASAC issued to two new documents during the NBDF’s Bleeding Disorders Conference this past August. The National Bleeding Disorders Foundation (NBDF) is…
Ask a Social Worker: How Can I Heal From Medical Trauma?
Health and Well Being, Living with a Bleeding Disorder
Advice on how to cope with post-traumatic stress disorder that’s related to a medical event. Ask a Social Worker is a monthly…
All About Bypassing Agents for Hemophilia
Industry News & Research, Living with a Bleeding Disorder
Learn more about these treatments for inhibitors. One of the most problematic issues that can occur with hemophilia are inhibitors—a complication that happens…
Why Donating Plasma is Essential for Research & Diagnostic Testing
Industry News & Research
Is donating plasma safe when you have a severe bleeding disorder? In most cases, the answer is yes! Plasma fully regenerates in…
Making the Transition from Pediatric to Adult Care
Health and Well Being, Living with a Bleeding Disorder
Taking charge of your own health care can be daunting, but early preparation helps smooth the way. For people with bleeding disorders,…
National Hemophilia Foundation has a New Name: National Bleeding Disorders Foundation (NBDF)
Advocacy & Legislation, Industry News & Research, Living with a Bleeding Disorder
In 1948, the foundation got its start as simply “The Hemophilia Foundation” – then in 1956, the foundation formally incorporated into what…
Gene Therapy: One Down, But One to Go
Advocacy & Legislation, Industry News & Research, Living with a Bleeding Disorder
Roche is discontinuing its investigational hemophilia A gene therapy called SPK-8016. (SPK refers to Spark Therapeutics, which is carrying out trials) But clinical…
New Therapy for Hemophilia B and Inhibitors
Advocacy & Legislation, Industry News & Research, Living with a Bleeding Disorder
Alhemo™ (concizumab injection) is used for hemophilia B patients who have developed inhibitors, which prevent replacement factor IX therapies from working properly….