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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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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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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Continued Conversation on the State of Access to Women’s Health Care

Advocacy & Legislation, Health and Well Being

Recent changes in access to women and girls’ health care are likely to have detrimental effects for the blood and bleeding disorders…

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Open Enrollment for 2023 Health Insurance is Underway!

Advocacy & Legislation, Health and Well Being

Open enrollment for 2023 health insurance programs has started! The Hemophilia Federation of America (HFA) offers tips for navigating the open enrollment…

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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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Ask a Social Worker: How Can I Convince Someone to Seek Mental Health Treatment?

Health and Well Being

Advice for family members on how to bring up mental health treatment with loved ones. Ask a Social Worker is a monthly…

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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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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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Gene Therapy and Bleeding Disorders: Making Sense of It All

Health and Well Being, Industry News & Research

Gene Therapy is definitely a dominant topic in the bleeding disorders community, with new articles being published regularly. Read some of the…

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Supreme Court Decision and Genetic Testing

Health and Well Being, Industry News & Research

by: Laurie Kelley Thoughts on how the Supreme Court decision on abortion might affect genetic testing outcomes. Read more here. The recent…

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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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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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The High Cost of Hemophilia

Advocacy & Legislation, Health and Well Being, Industry News & Research

Just one bleed in people with severe hemophilia A receiving prophylaxis has the potential to negatively affect health-related quality of life, and raise…

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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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My Biggest Fear Comes True for My Adult Son With Hemophilia

Health and Well Being, Living with a Bleeding Disorder

by: Cazandra Campos-MacDonald My biggest fear for my sons, who live with severe hemophilia, is an auto accident. When my oldest son, Julian, began to…

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Managing Bleeding Disorders Requires Attention to Mental Health

Health and Well Being, Living with a Bleeding Disorder

by: Jennifer Lynne It’s easy to spot physical damage, such as swollen joints, nosebleeds, limps, and bruises, when one suffers from a…

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Anxiety, Depression Need Better Management in Hemophilia: Survey

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

by: Lindsey Shapiro Ph.D.  Symptoms of pain, anxiety, and depression generally increased with disease severity in people with hemophilia and were also associated with…

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