News

Overcoming Loneliness: Strategies for Better Mental Health

Health and Well Being, Living with a Bleeding Disorder

Break out of solitary habits with these strategies. As we grow older, we’re more likely to experience loneliness. Because of hearing loss,…

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Hemophilia and Heart Health: Balanced Cardiac Care

Health and Well Being, Living with a Bleeding Disorder

Cardiac care can be a delicate balancing act for people with bleeding disorders. The minute Pedro Estalilla came home from his job…

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GLHF Website Updates, Including Medicare Changes, Gene Therapy, Pain Management and more

COVID-19, GLHF News, Health and Well Being, Living with a Bleeding Disorder

As we all know, the web is a pretty fast-moving place. In that fast-moving environment, GLHF likes to think that its website…

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Bleeding Disorders: What Your Pain Is Trying to Tell You

Health and Well Being, Living with a Bleeding Disorder, Pain Management

An overview of the types of pain you might experience, what you can do to manage pain at home, and when to…

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Rate of Coverage Losses from Medicaid Unwinding Continues to Cause Alarm

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

Concern grows over the mounting tally of Medicaid coverage losses impacting people who remain eligible for the program. Read how federal regulators…

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Statement: HFA Responds to Latest Gene Therapy Announcement

Gene Therapy, Industry News & Research, Living with a Bleeding Disorder

Yesterday, the U.S. Food and Drug Administration approved Roctavian (valoctocogene roxaparvovec), the first gene therapy for hemophilia A. This new treatment option, for the treatment of…

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Susan Skinner Memorial Fund Scholarship Program is Open

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

that the call for applications for the Susan Skinner Memorial Fund (SSMF) Scholarship program is now open! Please spread the word among…

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How to Keep Summer Activities Safe for Kids with Bleeding Disorders

Health and Well Being, Living with a Bleeding Disorder

Learn why a popular piece of backyard play equipment is riskier than you might think. It’s summertime, and kids are out of…

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It is Family: A Conversation with Saylor Behrens

Health and Well Being, Living with a Bleeding Disorder

When Saylor Behrens’ biology professor told her class that hemophilia is the result of incest, she grew angry. She knew better. Her…

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Does Hemophilia Mean Brittle Bones? Part 1.

Health and Well Being, Living with a Bleeding Disorder

by: Paul Clement Many studies have linked having hemophilia to a significantly increased risk of developing osteoporosis, or “holey bones” (osteo means “bone”…

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The Low Cost of Being Female with a Bleeding Disorder?

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

Female hemophilia A patients and carriers have more frequent bleeds than males, yet a smaller proportion receive factor to prevent or stop them, a U.S….

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New Survey Spotlights Ongoing Concerns for People Living with Hemophilia B

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

Carefully controlled schedules. Undercurrents of uncertainty. Persistent pain. People who are living with hemophilia B, and those who love them, face a…

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Guilt in Mothers of Children with Hemophilia Focus of New Study

Health and Well Being, Living with a Bleeding Disorder

Researchers from the Children’s Healthcare of Atlanta and Emory University recently published the results of a small study investigating the subject of…

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FDA approves once-weekly ALTUVIIIO™, a new class of factor VIII therapy for hemophilia A that offers significant bleed protection

Industry News & Research, Living with a Bleeding Disorder

FDA approves once-weekly ALTUVIIIO™, a new class of factor VIII therapy for hemophilia A that offers significant bleed protection Paris and Stockholm – February 23, 2023 – The U.S. Food and Drug Administration (FDA) has…

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From Patient to Physician

Health and Well Being, Living with a Bleeding Disorder

Start the Conversation: Dr. Aaron Cheng In this video, Dr. Aaron Cheng, a resident in internal medicine at Massachusetts General Hospital, shares…

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The Importance of Copay Assistance Protections: Awareness Grows

Industry News & Research, Living with a Bleeding Disorder

For over three decades, March has been designated “Bleeding Disorders Awareness Month.” HFA and member organizations across the country mark the occasion…

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Aminocaproic Acid Manufacturer Shuttered Though Not Expected to Trigger Shortage

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

Aminocaproic acid, which helps prevent the premature breakdown of blood clots, is often used to treat more minor bleeds in the nose…

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Guilt in Mothers of Children with Hemophilia Focus of New Study

Health and Well Being, Living with a Bleeding Disorder

Study authors looked at potential contributing factors to guilt, coping strategies, and perception of children’s life satisfaction. Researchers from the Children’s Healthcare…

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Start the Conversation: From Patient to Physician

Health and Well Being, Living with a Bleeding Disorder

To end Bleeding Disorders Awareness Month and celebrate National Doctors Day, Dr. Aaron Chen shares his story of how living with thalassemia…

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New Medscape Activity to Help Institutions Offer Gene Therapy

Gene Therapy, Industry News & Research, Living with a Bleeding Disorder

NHF is pleased to announce that its collaboration with Medscape continues with a new accredited educational activity designed to help healthcare providers…

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New Survey Spotlights Ongoing Concerns for People with Hemophilia B

Health and Well Being, Living with a Bleeding Disorder

Carefully controlled schedules. Undercurrents of uncertainty. Persistent pain. People who are living with hemophilia B, and those who love them, face a…

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What You Need to Know About Hemochromatosis

Industry News & Research, Living with a Bleeding Disorder

This blood disorder affects more than 1 million Americans and has no cure, but there are effective treatments. Hemochromatosis, also known as…

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WFH Gene Therapy Registry Goes Live

Industry News & Research, Living with a Bleeding Disorder

The new registry will help monitor the long-term safety and efficacy of hemophilia gene therapies in people around the world. The World…

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Common Questions About von Willebrand Disease (VWD)

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

It’s the most prevalent, yet lesser known, bleeding disorder. Here’s what you need to know about VWD. by: Michael Hickey Of the…

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