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…

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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…

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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….

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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…

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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 —…

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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?…

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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…

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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. …

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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