News
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…
Hemophilia History: The Romanov Family – Insights From Historian Dr. Helen Rappaport
Living with a Bleeding Disorder, Industry News & Research, Uncategorized
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
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…
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
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…
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
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…
New Paper Highlights Integrated Care Model and the National HTC Network
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
For more than 40 years, the hemophilia treatment center (HTC), the U.S. HTC Network (USHTCN), and its model of integrated, patient-centered care…
Patient-Reported Data Informs New Study on Sexual Health and Hemophilia
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
An understanding of sexual health in people living with hemophilia (PWH), including difficulties with sexual activity and intimacy, has been historically lacking….
What You Should Know About Hematomas
Health and Well Being, Living with a Bleeding Disorder
Bruises and hematomas are similar, but they have some important differences. See what causes hematomas, what makes them unique, and how you…
NHF Applauds Congressional Enactment of The Hemophilia SNF Access Act
Industry News & Research, Living with a Bleeding Disorder
The National Hemophilia Foundation is thrilled to announce that its top legislative priority in 2020, The Hemophilia SNF Access Act. The National…
State of Denial: Tips on How to Work with Your Insurance Provider When You are Denied Coverage for Services or Medications
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder, Uncategorized
by: Laurie Kelley When you submit an insurance form for coverage, have you ever been denied? What should you do if you’ve already…
Learn More About the Latest in Gene Therapy: FAQ’s, Clinical Trials and Scientific Research
Industry News & Research, Living with a Bleeding Disorder
The National Hemophilia Foundation (NHF) heard a lot of questions from the community about gene therapy clinical trials for hemophilia at its…