News
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…
Rare Disease Day is Feb. 27! Dr. Califf, Commissioner of Food and Drugs, Kicks Off This Year’s Theme, “Intersections with Rare Diseases – A Patient Focused Event”
Advocacy & Legislation, Living with a Bleeding Disorder
The Food and Drug Administration (FDA) has announced that FDA’s Rare Disease Day is Monday, February 27. Registration is open for this…
Pfizer and Sangamo Therapeutics Announce Phase 3 Trial of Investigational Gene Therapy for Hemophilia A Has Re-Opened Recruitment September 23, 2022 Share on facebook Share on twitter Share on linkedin
Industry News & Research, Living with a Bleeding Disorder
Pfizer and Sangamo Therapeutics announced that the Phase 3 AFFINE study evaluating giroctocogene fitelparvovec, an investigational gene therapy for patients with moderately…
HFA Statement on FDA Approval of First-Ever Gene Therapy for Hemophilia B
Industry News & Research, Living with a Bleeding Disorder
Five years ago, Hemophilia Federation of America articulated a broad vision that includes advocating for improved care and quality of life for…
FDA Approves First Gene Therapy to Treat Adults with Hemophilia B
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
On November 22, the U.S. Food and Drug Administration approved Hemgenix (etranacogene dezaparvovec), an adeno-associated virus (AAV) vector-based gene therapy. It is…
Additional Health Risks for Men with Hemophilia
Living with a Bleeding Disorder, Men with Bleeding Disorders
Diabetes and infection with human immunodeficiency virus (HIV) increase the risk of high blood pressure (hypertension) among men with hemophilia, a U.S. study…
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)…
Pain Management for Adults
Living with a Bleeding Disorder, Pain Management
Pain is a serious medical concern in America. For those with a bleeding disorder, pain as a result of a bleeding episode…
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…
Statement from Patient Groups in Response to Court Ruling on Cost-Free Coverage of Preventive Health Services
Industry News & Research, Living with a Bleeding Disorder
HFA and 25 other patient groups issued the following statement in response to Wednesday’s court ruling in Braidwood v. Becerra (a lawsuit formerly known…
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…