News
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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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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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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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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…
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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…
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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…