News

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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New Hemophilia Gene Therapy Video Presentations Available

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

After overwhelming demand from the community, video presentations on gene therapy and advances in hemophilia therapies over the last 20 years from…

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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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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…

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Court Rules in Favor of Patients Regarding Copay Accumulator Adjustor Programs

Advocacy & Legislation, Living with a Bleeding Disorder

In a major victory for patients who depend on prescription drugs, Judge John D. Bates of the U.S. District Court for the…

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Learn More About Patient Assistance Programs

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

There are several programs and resources designed to assist individuals and families grappling with the financial burden of living with an inheritable…

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Five Ordinary Items That Are Unique to Our Hemophilia Home

Living with a Bleeding Disorder

by: Alliah Czarielle  Living with hemophilia entails some interesting household items In the hustle and bustle of daily life, we often overlook the…

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Gynecologists Have Significant Part to Play in Shrinking Diagnostic Gaps

Industry News & Research, Living with a Bleeding Disorder, Women with Bleeding Disorders

A new commentary, “Closing the Diagnostic Gap in Adolescents and Young Adult Women with Bleeding Disorders,” published in the August issue of…

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Ask a Social Worker: How Can I Heal From Medical Trauma?

Health and Well Being, Living with a Bleeding Disorder

Advice on how to cope with post-traumatic stress disorder that’s related to a medical event. Ask a Social Worker is a monthly…

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All About Bypassing Agents for Hemophilia

Industry News & Research, Living with a Bleeding Disorder

Learn more about these treatments for inhibitors. One of the most problematic issues that can occur with hemophilia are inhibitors—a complication that happens…

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Making the Transition from Pediatric to Adult Care

Health and Well Being, Living with a Bleeding Disorder

Taking charge of your own health care can be daunting, but early preparation helps smooth the way. For people with bleeding disorders,…

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National Hemophilia Foundation has a New Name: National Bleeding Disorders Foundation (NBDF)

Advocacy & Legislation, Industry News & Research, Living with a Bleeding Disorder

In 1948, the foundation got its start as simply “The Hemophilia Foundation” – then in 1956, the foundation formally incorporated into what…

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Gene Therapy: One Down, But One to Go

Advocacy & Legislation, Industry News & Research, Living with a Bleeding Disorder

Roche is discontinuing its investigational hemophilia A gene therapy called SPK-8016. (SPK refers to Spark Therapeutics, which is carrying out trials) But clinical…

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New Therapy for Hemophilia B and Inhibitors

Advocacy & Legislation, Industry News & Research, Living with a Bleeding Disorder

Alhemo™ (concizumab injection) is used for hemophilia B patients who have developed inhibitors, which prevent replacement factor IX therapies from working properly….

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In For a Bad Surprise

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

As of 2022, the federal “No Surprises Act” protects people covered under group and individual health plans from receiving surprise medical bills…

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Origins of Pharmacies

Health and Well Being, Living with a Bleeding Disorder

Specialty pharmacies are integral to expert factor delivery. But did you know that the first pharmacies were developed in the 8th century…

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