News

Who’s at Higher Risk for Iron Deficiency?

Health and Well Being, Industry News & Research, Living with a Bleeding Disorder, Women with Bleeding Disorders

Learn why women, girls, and people with the potential to menstruate (WGPPM) who have hemophilia, von Willebrand disease, or other inheritable blood…

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Yale Researchers Explore the Possibilities of von Willebrand Factor

Industry News & Research, Women with Bleeding Disorders

Researchers at the Yale School of Medicine have been studying the key clotting protein von Willebrand factor (VWF), to shed light on…

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Statement: HFA and NBDF Address WHO Recommendations

Health and Well Being, Industry News & Research

Hemophilia Federation of America (HFA) and the National Bleeding Disorders Foundation (NBDF) are deeply concerned by the World Health Organization’s (WHO) recommendation…

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Women with VWD or Hemophilia Not at Risk for Other Female Medical Problems – But Additional Concerns May Need Diagnosis and Treatment

Living with a Bleeding Disorder, Women with Bleeding Disorders

Women who have von Willebrand disease or hemophilia are not at risk for other female medical problems, but two common disorders in…

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Pilot Study Explores Educational Needs of HTC Physical Therapists

Industry News & Research, Living with a Bleeding Disorder

Though it is generally recognized in the bleeding disorders community that physical therapists (PTs) are essential members of the core interdisciplinary teams…

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VWD Book for Children!

Health and Well Being, Living with a Bleeding Disorder

Fun Facts About a von Willebrand Warrior is a new softcover storybook for children with von Willebrand disease that empowers and educates…

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Gene Therapy Preparedness – It’s Time to Get Educated

Industry News & Research, Living with a Bleeding Disorder

With the advent of gene therapy, patients will need to educate themselves more about eligibility, risks, compliance and costs. And they should educate…

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Concerns for Women with Polycystic Ovary Syndrome and Endometriosis

Health and Well Being, Pain Management, Women with Bleeding Disorders

Women with bleeding disorders and other medical concerns, or who have von Willebrand disease or hemophilia, are not necessarily at risk for…

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Study Suggests Racial and Ethnic Disparities in Hemophilia and ITI

Industry News & Research, Living with a Bleeding Disorder

Findings of a new study uncovered specific disparities in hemophilia care by focusing on the use of immune tolerance therapy (ITI) in…

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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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