News

The Joy of Lobbying the Senate on Behalf of my Sons with Hemophilia

Advocacy & Legislation, Living with a Bleeding Disorder

How I advocated for the bleeding disorders community on Capitol Hill. by: Joe MacDonald Last Thursday, I visited Washington, D.C., to join my…

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New Hemophilia Fact Sheet Now Available

Industry News & Research, Living with a Bleeding Disorder

The fact sheet includes basic information about hemophilia. The National Bleeding Disorder Foundation’s (NBDF) HANDI Resource Center is pleased to announce the…

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Think Positive!

Health and Well Being, Living with a Bleeding Disorder

A hemophilia diagnosis can upset your beliefs, feelings, and life. This book, written by Laureen A. Kelley, offers simple, concrete ways to…

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Bleeding Disorders Awareness Month

Advocacy & Legislation, GLHF News, Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

Each March, the community calls attention to inheritable blood and bleeding disorders during Bleeding Disorders Awareness Month. This time gives patients and…

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Navigating the financial challenges of bleeding disorders

Health and Well Being, Living with a Bleeding Disorder

As a nonprofit pauses its assistance, 5 programs still help those with hemophilia. by: Jennifer Lynne A person like me, with bleeding…

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Save the date! GLHF’s Annual Wisconsin Bleeding Disorders Conference (WBDC) is June 7-9

GLHF News, Living with a Bleeding Disorder

Annually, GLHF hosts the Wisconsin Bleeding Disorders Conference for individuals and families living with a bleeding disorder. The weekend provides an opportunity…

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A Gathering of the Generations: Reflecting on the Past, Present and Future of the Bleeding Disorders Community

GLHF News, Living with a Bleeding Disorder

Saturday, April 20, 10 am – 2 pm, Blue Harbor Conventions Center, Sheboygan, WI In 2024, GLHF is celebrating 50 years of…

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Study Suggests Hemophilia Patient Preferences Evolving Along with Treatments

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

In recent years, the arrival of novel hemophilia treatments that are effective and less burdensome to administer have opened up new possibilities…

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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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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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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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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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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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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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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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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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Bypassing Agents for Hemophilia Explained

Industry News & Research, Living with a Bleeding Disorder

Learn about bypassing agents as treatment for inhibitors and whether they might be right for you. One of the most problematic issues…

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