News
von Willebrand Disease (VWD) and Iron Deficiecy – Speaker: Bethany Samuelson, M.D.
Living with a Bleeding Disorder, Health and Well Being, Industry News & Research
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
Industry News & Research, Health and Well Being
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
Industry News & Research, Health and Well Being
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
Living with a Bleeding Disorder, Health and Well Being
“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
Industry News & Research, Advocacy & Legislation, Health and Well Being
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
Living with a Bleeding Disorder, Health and Well Being
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
Living with a Bleeding Disorder, Health and Well Being, Industry News & Research
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…
What Older People with Bleeding Disorders Need to Know About Osteoporosis
Health and Well Being, Living with a Bleeding Disorder
Compared with other groups, people with hemophilia have a higher risk of the disease. by: Kathryn Anne Stewart Osteoporosis, a disease of…
6 Facts About Women and Hemophilia
Health and Well Being, Living with a Bleeding Disorder
Why it often goes misdiagnosed, the most common symptoms, and more. 1. Women with hemophilia are often undiagnosed or misdiagnosed Historically hemophilia…
Bleeding Disorders A to Z: How Bleeding Disorders Are Diagnosed
Health and Well Being, Industry News & Research
Here’s a rundown of the various blood tests providers use to diagnose hemophilia, vonWillebrand Disease and other bleeding disorders. by: Michael Hickey…
Advocating for Your Care in the Emergency Room
Living with a Bleeding Disorder, Health and Well Being
by: Lena Volland, PT, Ph.D.(c). In this video, Lena Volland, PT, DPT, Director of Education at the NHF, discusses how to prepare…
Ask a Social Worker: How Can I Be an Advocate for the Hemophilia Community?
Health and Well Being, Living with a Bleeding Disorder
Advice for people who are looking to help raise awareness. by: Bobby Korathu, MSSA, LCSW. Korathu is a social worker at the…
Four Reasons to Establish Care at a Hemophilia Treatment Center
Health and Well Being, Living with a Bleeding Disorder
Learn why HTCs can be partners in care over the course of a lifetime. If you or someone you love has been…
National Hemophilia Foundation “Starts the Conversation” During Bleeding Disorders Awareness Month, March 1-31
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
Awareness month campaign encourages the community to raise their voices and share what is most important and relevant to their conditions throughout…
Clinical Study and New Website to Focus on von Willebrand Disease and Pregnancy
Living with a Bleeding Disorder, Health and Well Being
This new study was developed to increase understanding of how best to manage bleeding during delivery and the postpartum period in women…
Seek Immediate Medical Care for These Bleeds
Health and Well Being, Living with a Bleeding Disorder
Here’s everything you need to know about the most dangerous bleeds, including symptoms and preventive measures. by: Michael Hickey Members of the…
Bleeding Disorders in Pop Culture
Health and Well Being, GLHF News
A roundup of films, TV shows and plays that have featured hemophilia and other bleeding disorders. Having a rare disease like hemophilia…
Clinical Study and New Website to Focus on von Willebrand Disease and Pregnancy
Industry News & Research, Health and Well Being, Living with a Bleeding Disorder
The onset of childbirth and the postpartum period are times when women with von Willebrand disease (VWD) are at an increased risk…
New Data Analysis Sheds Light on Bleeding Patterns in Young VWD Patients
Industry News & Research, Health and Well Being, Living with a Bleeding Disorder
Historically, data on infants and toddlers (ITs) with von Willebrand disease (VWD), particularly relevant to bleeding patterns, has been lacking. To address…