News
The Importance of Transgender Health: Interview with Alexis Dinno
Health and Well Being, Living with a Bleeding Disorder
November was Transgender Health Awareness Month, a time to reflect on the experiences of transgender and gender nonconforming individuals seeking and receiving…
First Patient Dosed with Hemophilia Gene Therapy Candidate ASC618
Gene Therapy, Industry News & Research
The first patient has been dosed in ASC Therapeutics clinical trial of ASC618, the company’s investigational AAV8 vector-based gene therapy for patients…
Save-the-Date for our 2024 Best Bloody Competitions! Tickets on Sale Next Week!
GLHF News
Tickets on sale December 18! Holiday-priced tickets for Milwaukee’s, Madison’s and Green Bay’s Best Bloody will be on sale Dec. 18 – Jan….
Gene Therapy for Hemophilia — Progress and Conundrums
GLHF News
In this video, Dr. Radek Kaczmarek of the Indiana University School of Medicine lays out the scientific advances underpinning two currently approved gene…
What is Therapeutic Phlebotomy?
Health and Well Being
While bloodletting was abandoned long ago by modern medicine, the procedure is still used today to treat specific medical conditions. Phlebotomy —…
The Liver Disease That’s on the Rise
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Here’s why people with bleeding disorders need to know about it. Have you heard of metabolic dysfunction-associated steatotic liver disease, or MASLD?…
GLHF Plans Successful 2023 Regional Meeting – 13 HTCs Join to Discuss Goals and Emerging Issues
GLHF News
Did you know that GLHF serves as the Regional Core Center of Region V-West/Northern States Region for the United States Hemophilia Treatment…
Study Results Encourage Discussion of Therapeutic Options for VWD Patients with Menorrhagia
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder, Women with Bleeding Disorders
A new study investigated therapeutic options for von Willebrand Disease patients to help mitigate the negative health impacts of heavy menstrual bleeding. …
Hepatocellular Cancer Screening and Gene Therapy Preparedness the Focus of New Recommendations
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
NBDF’s Medical and Scientific Advisory Council issued two new documents making recommendations on criteria for hepatocellular cancer (HCC) screening and helping hemophilia…
NBDF Government Relations Update
Advocacy & Legislation
Community members and policymakers at the state and federal levels nationwide are starting conversations about copay accumulators, product safety, and more, with…
Court Overturns Accumulator Adjuster Rule
Advocacy & Legislation, Living with a Bleeding Disorder
Court orders HHS to revise federal regulations permitting harmful copay accumulators In a preliminary victory for consumers, a federal judge in the…
New Hemophilia Gene Therapy Video Presentations Available
Industry News & Research
The National Bleeding Disorders Foundation (NBDF) is pleased to announce the availability of a series of video presentations on fundamental topics relevant…
Hepatocellular Cancer Screening and Gene Therapy Preparedness the Focus of New Recommendations
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
Two new documents have been issued by the NBDF’s Medical and Scientific Advisory Council (MASAC), which periodically writes recommendations and advisories on…
The Importance of Telehealth
Health and Well Being, Living with a Bleeding Disorder
Interview with Jacob Murcock, Chapter Executive Director, Nevada It was a pleasure for the foundation to sit down with Jacob to learn…
World Hemophilia Day 2024 Theme Revealed
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
On April 17, 2024, the global bleeding disorders community will come together to celebrate World Hemophilia Day. The theme of the event…
WFH Humanitarian Aid Program supports Syrian refugees (Part 1: Karam’s story)
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
The World Federation of Hemophilia (WFH) provides care to people with bleeding disorders (PWBDs) all around the world—including individuals living in refugee…
Hepatocellular Cancer Screening and Gene Therapy Preparedness the Focus of New Recommendations
Gene Therapy, Industry News & Research
Two new documents have been issued by the NBDF’s Medical and Scientific Advisory Council (MASAC), which periodically writes recommendations and advisories on…
The State of Mental Health on College Campuses
Health and Well Being
Enrolling in college as a student with a mental health condition doesn’t need to be overwhelming or intimidating. Students who know their…
Study Results Encourage Discussion of Therapeutic Options for VWD Patients with Menorrhagia
Industry News & Research
While the majority of women with von Willebrand disease (VWD) will experience heavy menstrual bleeding (HMB) often associated negative impacts on overall…
New publications provide guidance to increase identification of PWBDs
Industry News & Research
One of the World Federation of Hemophilia’s (WFH) 2021-2025 strategic priorities is to enhance the identification and diagnosis of people with bleeding…
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…
New Study Looks at Hemophilia Survival Rate Disparities
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Black men experience much lower hemophilia survival rates compared to their white counterparts. Results of a new study published in the journal Haemophilia are…
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…
International Hemophilia Survey Suggests Psychosocial Challenges and Lack of Shared Decision Making
Health and Well Being, Industry News & Research
Some compelling results from the ‘Hemophilia Life Stages and Changes Global Survey’ were recently announced in a new press release. The survey…