News
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…
Interesting Fictional Teens….With Bleeding Disorders!
Living with a Bleeding Disorder
by Richard J. Atwood Do you ever wonder whether teenage fictional characters with bleeding disorders can foreshadow the future of our community?…
Does Having a Bleeding Disorder Mean I’m at a Higher Risk for Contracting COVID? Q & A.
COVID-19, Living with a Bleeding Disorder
As the world continues to grapple with the COVID-19 pandemic, the bleeding disorders community understandably has many questions about the disease’s specific…
Managing a Bleeding Disorder During a Pandemic
COVID-19, Living with a Bleeding Disorder
As the world continues to grapple with the COVID-19 pandemic, the bleeding disorders community understandably has many questions about the disease’s specific…
GET WIRED WITH HFA
Industry News & Research, Living with a Bleeding Disorder, Women with Bleeding Disorders
Feeling disconnected from knowledge about women’s health and research? Get WIRED with the Hemophilia Federation of America (HFA) is seeking women with bleeding…
Unanswered Questions Remain in Gene Therapy
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
A recent commentary published in the journal Haemophilia, posits that while clinical trials for hemophilia gene therapy approach conclusion, there remain significant unanswered…
What to Do if You Miss Your Child’s Annual Exam
Living with a Bleeding Disorder
Routine healthcare visits are being held up because of the pandemic, so many parents are missing their children’s annual hemophilia treatment center…
FDA Recommends Additional Data for BioMarin’s Investigational Gene Therapy
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
Biomarin announced that they received a Complete Response Letter (CRL) from the U.S. Food and Drug Administration (FDA) on August 18th for their…