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…
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…
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…
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…
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…
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)…
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…
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…
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”…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…