News

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, Uncategorized

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, Uncategorized

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, Uncategorized

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, Uncategorized

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, Uncategorized

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 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, Uncategorized

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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Common Questions About von Willebrand Disease (VWD)

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

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, Uncategorized

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, Uncategorized

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, Uncategorized

The Food and Drug Administration (FDA) has announced that FDA’s Rare Disease Day is Monday, February 27. Registration is open for this…

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Pfizer and Sangamo Therapeutics Announce Phase 3 Trial of Investigational Gene Therapy for Hemophilia A Has Re-Opened Recruitment September 23, 2022 Share on facebook Share on twitter Share on linkedin

Industry News & Research, Living with a Bleeding Disorder

Pfizer and Sangamo Therapeutics announced that the Phase 3 AFFINE study evaluating giroctocogene fitelparvovec, an investigational gene therapy for patients with moderately…

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HFA Statement on FDA Approval of First-Ever Gene Therapy for Hemophilia B

Industry News & Research, Living with a Bleeding Disorder

Five years ago, Hemophilia Federation of America articulated a broad vision that includes advocating for improved care and quality of life for…

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FDA Approves First Gene Therapy to Treat Adults with Hemophilia B

Industry News & Research, Living with a Bleeding Disorder, Uncategorized

On November 22, the U.S. Food and Drug Administration approved Hemgenix (etranacogene dezaparvovec), an adeno-associated virus (AAV) vector-based gene therapy. It is…

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New Document to Help Residential Substance Use Disorder Placement for Individuals with Bleeding Disorders

Health and Well Being, Living with a Bleeding Disorder

The document includes best practices for HTC providers in accessing residential substance use disorder treatment Historically, many residential substance use disorder (SUD)…

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Does Hemophilia Mean Brittle Bones?

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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Pain Management for Adults

Living with a Bleeding Disorder, Uncategorized

Pain is a serious medical concern in America.  For those with a bleeding disorder, pain as a result of a bleeding episode…

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