News
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 / Coronavirus, 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 / Coronavirus, 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
Industry News & Research, Advocacy & Legislation, COVID-19 / Coronavirus, Health and Well Being, 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
Living with a Bleeding Disorder, COVID-19 / Coronavirus
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
Living with a Bleeding Disorder, Health and Well Being
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
Living with a Bleeding Disorder, Industry News & Research
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?…
Managing a Bleeding Disorder During a Pandemic
COVID-19 / Coronavirus, Living with a Bleeding Disorder, Uncategorized
As the world continues to grapple with the COVID-19 pandemic, the bleeding disorders community understandably has many questions about the disease’s specific…
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…
Mental Health
COVID-19 / Coronavirus, Living with a Bleeding Disorder
The upheaval and fear we experience during COVID-19 can have a lasting impact on our mental health. Learn more about how to…
Health & Exercise
Living with a Bleeding Disorder, COVID-19 / Coronavirus
How can two balloons keep your kids active? You’d be surprised. This video from Raising Rookies shows an array of games kids…
NHF Webinar Today, June 30: June for Joint Health
Living with a Bleeding Disorder, COVID-19 / Coronavirus
Join us for an active and educational June for Joint Health webinar. Learn how you can start to form healthy habits by…
Medexus Acquires XINITY® from Aptevo
Living with a Bleeding Disorder
Aptevo Theraoeutics has sold their recombinant factor IX product IXINITY® to Canada-based Medexus Pharmaceuticals. IXINITY®, which first received approval from the U.S….
6 Do’s and Don’ts for Better Sleep
Living with a Bleeding Disorder
by Ian Landau Taking Charge In his TED Talk, “Sleep is your superpower,” Matthew Walker, PhD, a professor of neuroscience and psychology…
Children’s Storybooks Provide Insight and Education for Kids with Hemophilia
Living with a Bleeding Disorder
LA Kelley Communications has many books back in print that provide the bleeding disorders community with high quality educational materials. Their content…
New Books to Manage Hemophilia for All Ages
Living with a Bleeding Disorder
Global health education company Jumo Health is releasing four new comic books that provide contextual and age-appropriate information for children, teenagers, and…
Who Makes the Decision?
Living with a Bleeding Disorder
by: Derek L. Markley It has been more than eight years since St. Jude Children’s Research Hospital, University College London, and the…
What’s the Best Way to Learn About Your Bleeding Disorder?
Living with a Bleeding Disorder
by: Laurie Kelley Our world is biased toward visual information and learning, because humans are mainly visual beings. From advertising to teaching…