News

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…

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…

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…

Black Women with Bleeding Disorders Are Striving to Be Seen and Heard
Health and Well Being, Living with a Bleeding Disorder, Women with Bleeding Disorders
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…

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…

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…

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…

Hemophilia History: The Romanov Family – Insights From Historian Dr. Helen Rappaport
Industry News & Research, Living with a Bleeding Disorder
Insights from historian Dr. Helen Rappaport – NHF sat down with historian Dr. Helen Rappaport to learn more about how hemophilia impacted…

Advocating for Your Care in the Emergency Room
Health and Well Being, Living with a Bleeding Disorder
by: Lena Volland, PT, Ph.D.(c). In this video, Lena Volland, PT, DPT, Director of Education at the NHF, discusses how to prepare…

Hemophilia A vs. B: What’s the Difference?
Industry News & Research, Living with a Bleeding Disorder
Much is the same when it comes to hemophilia A and B, but a few key differences change how common—and how treatable—they…

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…

A Brief History of Gene Therapy: What It Means and Its Promise for the Hemophilia B Community
Industry News & Research, Living with a Bleeding Disorder
Over 10,000 individuals worldwide have been treated with various gene therapy products. Gene therapy is a medical treatment that uses DNA to…

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
Health and Well Being, Living with a Bleeding Disorder
This new study was developed to increase understanding of how best to manage bleeding during delivery and the postpartum period in women…

Hemophilia and Blood Clots: A Surgery That Nearly Cost Me My Life
Living with a Bleeding Disorder
VWD, Hemophilia B and Surgery as a Woman. Jennifer Lynne, a woman with Hemophilia B and VWD, faced surgery… and almost lost…

New Study Looks at Physical Activity Risk in Patients with Hemophilia A
Industry News & Research, Living with a Bleeding Disorder
This study designed to assess the link between physical activity levels, FVIII infusion, and occurrence of bleeding episodes. Results of a recently…

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…

Clinical Study and New Website to Focus on von Willebrand Disease and Pregnancy
Health and Well Being, Industry News & Research, 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…