News
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…
Navigating the Pandemic with a Bleeding Disorder
COVID-19, Living with a Bleeding Disorder
Learn how three young adults with bleeding disorders are living life during the COVID-19 pandemic. Read more hemaware.org
Women Fighting for Change
Health and Well Being, Living with a Bleeding Disorder
Six women share their own stories of overcoming challenges and offer their best advice in hopes of educating, inspiring and uplifting other…
Marijuana and CBD for Chronic Pain: What You Need to Know
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Learn about the potential benefits and risks, along with what to look out for when evaluating products. Read more hemaware.org
Video: Dr. Jill Johnsen on My Life, Our Future Research Repository
Health and Well Being, Living with a Bleeding Disorder
In this video, Dr. Jill Johnsen of the University of Washington discusses how the My Life, Our Future Research Repository is helping her…
Helpful Tools to Keep Track of Your Hemophilia Treatments
Living with a Bleeding Disorder
These electronic options can help make record-keeping easier for people with bleeding disorders. Read more. Source: National Hemophilia Foundation, HEMAWARExpress
Why Compliance Matters When You Have a Bleeding Disorder
Living with a Bleeding Disorder
Adhering to your treatment schedule is associated with fewer bleeding events and a reduction in joint disease. Here is how to stay…
Chronic Pain, CAM and YOU
Health and Well Being, Living with a Bleeding Disorder
by Laurie Kelley Pain is highly personal. No two people experience the same feeling of pain, even when it’s the same injury,…
Managing Pain
Industry News & Research, Living with a Bleeding Disorder
by Paul Clement Pain and hemophilia go hand-in-hand. During a joint or muscle bleed, blood fills the joint cavity or makes muscles…