News

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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Comprehensive Pain Management: The Old and the New

Health and Well Being, Living with a Bleeding Disorder

In this video, pain management specialist, Dr. Kim Mauer of Oregon Health and Science University, provides an overview of current treatments available…

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Record-Keeping Tips for the Bleeding Disorders Community

Health and Well Being, Living with a Bleeding Disorder

by: Michael Hickey Keeping an accurate treatment log is an essential part of managing a bleeding disorder. Here’s how you can do…

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Statement from Patient Groups in Response to Court Ruling on Cost-Free Coverage of Preventive Health Services

Industry News & Research, Living with a Bleeding Disorder

HFA and 25 other patient groups issued the following statement in response to Wednesday’s court ruling in Braidwood v. Becerra (a lawsuit formerly known…

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von Willebrand Disease (VWD) and Iron Deficiecy – Speaker: Bethany Samuelson, M.D.

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

In this video, Dr. Bethany Samuelson Bannow, of Oregon Health & Science University, discusses the role of iron in the body, the…

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Additional Health Risks for Men with Hemophilia

Health and Well Being, Living with a Bleeding Disorder

Diabetes and infection with human immunodeficiency virus (HIV) increase the risk of high blood pressure (hypertension) among men with hemophilia, a U.S. study…

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Get Ready for the Hemocraft ™ Challenge! Loosely Based off of the Hit Video Game Minecraft, Hemocraft Teaches Kids the Importance of Staying Prepared and Sticking to a Treatment Plan!

Living with a Bleeding Disorder

What is Hemocraft ™? In partnership with the Entrepreneurial Game Studio at Drexel University, the National Hemophilia Foundation, and members of the…

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Gallery Captures Hemophilia Lives: Photographer Rankin Captures The Humanity in People with Hemophilia

Health and Well Being, Living with a Bleeding Disorder

“Portraits of Progress” is a project in partnership with CSL Behring that charted 60 years in the fight against hemophilia, and that…

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Black Women with Bleeding Disorders Are Striving to Be Seen and Heard

Health and Well Being, Living with a Bleeding Disorder

by: Andrea Collier Black women who have inheritable blood and bleeding disorders often face obstacles all along their journey—from diagnosis to treatment…

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Parents in the Bleeding Disorders Community Share Their Best Advice

Health and Well Being, Living with a Bleeding Disorder

HemAware asked parents for their best advice on what has helped them navigate their children’s bleeding disorders in the first few years…

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Ask a Social Worker: How Dangerous Is Cutting for Someone with Hemophilia?

Health and Well Being, Living with a Bleeding Disorder

Understanding the reasons why people self-harm, and what you can do to help. Ask a Social Worker is a monthly column featuring…

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Diabetes Risk in Hemophilia vs Unaffected Groups Compared in Retrospective Study

Industry News & Research, Living with a Bleeding Disorder

The hemophilia data for this study was drawn from de-identified medical records from four North American hemophilia treatment centers. The U.S. diabetes…

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