News
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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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Can People with Bleeding Disorders Take Blood Thinners?
Industry News & Research, Living with a Bleeding Disorder
by: Donna Behen Blood Safety Millions of Americans who have or are at high risk for heart disease regularly take anti-platelet drugs…
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Telehealth for the Bleeding Disorders Community
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Telemedicine provided vital access to blood and bleeding disorders care during the pandemic. What does the future hold for this technology? Remote…
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Safeguarding an Essential Treatment for Heavy Periods – What Contraception Bans Would Mean for the Bleeding Disorders Community.
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
In June, when the Supreme Court overturned Roe v. Wade and ended the constitutional right to abortion, women’s health advocates around the…
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What Men with Hemophilia Need to Know About Diabetes
Health and Well Being, Living with a Bleeding Disorder
Recent studies have found that older men with hemophilia have a higher risk of diabetes than those without the bleeding disorder. An…
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Mental Health Crisis for Teens
Health and Well Being, Living with a Bleeding Disorder
Adolescents in the blood disorders community who have mental health problems often face added barriers to serious behavioral health care. The last…
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Rare Disease Day is Feb. 27! Dr. Califf, Commissioner of Food and Drugs, Kicks Off This Year’s Theme, “Intersections with Rare Diseases – A Patient Focused Event”
Advocacy & Legislation, Living with a Bleeding Disorder
The Food and Drug Administration (FDA) has announced that FDA’s Rare Disease Day is Monday, February 27. Registration is open for this…