News
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…
New Data Analysis Sheds Light on Bleeding Patterns in Young VWD Patients
Health and Well Being, Industry News & Research, 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
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…
Living with Bleeding Disorders in the Time of COVID
COVID-19, Living with a Bleeding Disorder
by: Sari Harrar Pandemic stories of strength, perseverance and resiliency from three members of the bleeding disorders community. The COVID-19 pandemic has…
Four Decades of HIV
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
This past June marked a significant milestone for the bleeding disorders community. Forty years ago, on June 5, 1981, the CDC first…
NHF Marks the 40th Anniversary of the HIV Epidemic
Industry News & Research, Living with a Bleeding Disorder
June 3, 2021 – Statement from Nathan Schaefer, Vice President of Public Policy, National Hemophilia Foundation This June marks a painful anniversary…
June is Joint Health Month!
Health and Well Being, Living with a Bleeding Disorder
This June learn what your joints want, what they need, and how to help them keep you going. Read more. Source: National…
Video: Diagnostic Challenges and New VWD Guidelines
Industry News & Research, Living with a Bleeding Disorder
In this video, Robert Sidonio Jr., M.D., discusses the new von Willebrand Disease (VWD) Guidelines and the most significant changes that healthcare…
Let Your Voice Be Heard! Take the National HTC Patient Satisfaction Survey Today!
GLHF News, Health and Well Being, Living with a Bleeding Disorder
Hemophilia Treatment Centers (HTCs) across the United States are participating in the 2021 National HTC Patient Satisfaction Survey! If you, or someone…
as i see it: Patient Education Through Social Media in the COVID Era
COVID-19, Health and Well Being, Living with a Bleeding Disorder
by: Laurence Woollard, Hemophilia Influencer © PEN (Parent Empowerment Newsletter), LA Kelley Communications, Inc. The unparalleled, seismic societal shifts over the past…
COVID-19 Vaccines and Bleeding Disorders: FAQs and Guidance
COVID-19, Health and Well Being, Living with a Bleeding Disorder
COVID-19 Vaccines and Bleeding Disorders: FAQs These FAQs were created in anticipation of questions or concerns individuals with bleeding disorders may have…
President Trump Signs FY21 Federal Funding Bill Including Hemophilia SNF Access Act and Funding for Bleeding Disorders Programs
Advocacy & Legislation, COVID-19, Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
The Consolidated Omnibus Appropriations Bill, 2021, signed into law by President Trump on December 27, 2020 included a number of provisions important…