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….
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…
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…
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…
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…
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…
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…
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…
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…