News
Medicaid Changes Can Change Everything
Industry News & Research, Living with a Bleeding Disorder
Both HFA and NBDF issued important updates this month concerning new Medicaid work-reporting requirements. Beginning January 1, 2027, certain adults ages 19–64…
Bad Blood: A Cautionary Tale
Living with a Bleeding Disorder
This gripping documentary about how HIV and hepatitis C contaminated the US blood supply in the 1970s and 1980s is a must-see….
Hereditary Hemorrhagic Telangiectasia: More Than Just Nosebleeds
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Often misdiagnosed, this common blood disorder can frequently lead to anemia and sometimes organ damage. It can also cause life-threatening gastrointestinal, brain,…
Bleeding Disorder Self-Care and Self-Advocacy for College Students
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
Follow these tips to manage your condition while you’re away from home and on your own.
How to Build Your Child’s Confidence
Health and Well Being, Living with a Bleeding Disorder
Here’s what you should—and shouldn’t—say to kids to help them feel empowered about their bleeding disorder.
What Meaningful Change Looks Like
Living with a Bleeding Disorder, Women with Bleeding Disorders
Improving care for women and girls with bleeding disorders requires changes at multiple levels. It includes earlier recognition of heavy menstrual bleeding…
FAQ: The Importance of Genetic Counseling for Hemophilia and Other Bleeding Disorders
Living with a Bleeding Disorder, Women with Bleeding Disorders
What is genetic counseling? Genetic counseling helps people understand how a genetic test for inherited bleeding disorders may affect themselves, others in…
Heavy Periods: What Can Help
Living with a Bleeding Disorder, Women with Bleeding Disorders
Track Your Symptoms Keeping track of bleeding patterns can help providers recognize warning signs sooner. Consider noting: How many days bleeding lastsHow…
Bleeding Disorder Symptoms Across Stages of Life
Living with a Bleeding Disorder, Women with Bleeding Disorders
Bleeding disorders can affect women and girls differently at different stages of life. Symptoms may appear during childhood, intensify with menstruation or…
The Toll of Heavy Bleeding
Living with a Bleeding Disorder, Women with Bleeding Disorders
Heavy bleeding can disrupt nearly every aspect of daily life. People describe missing school and work, carrying extra clothes and menstrual products…
The Problem with Women As “Just Carriers” for Bleeding Disorders
Health and Well Being, Living with a Bleeding Disorder, Women with Bleeding Disorders
Classic medical teaching around hemophilia focused on X-linked inheritance: Males were affected, while females were carriers. But providers say that framework oversimplified the reality….
Von Willebrand Disease Research Gets Active
Industry News & Research, Living with a Bleeding Disorder, Women with Bleeding Disorders
The first serious efforts to develop long-acting subcutaneous preventive treatments for VWD are taking place. VGA039 is a subcutaneous antibody designed to…
Federal and State Advocacy Update
Advocacy & Legislation, Living with a Bleeding Disorder
A group of 26 states are suing the Centers for Medicare and Medicaid Services over the new work requirements for Medicaid eligibility;…
Introducing Bleeding.org Conversations: A New Podcast from NBDF
Health and Well Being, Living with a Bleeding Disorder, Women with Bleeding Disorders
Each month, we’re sitting down with the experts in our community for some real talk. Hosted by actor and advocate Greg Grunberg, Bleeding.org…
GLHF’s Wisconsin Bleeding Disorders Conference Hosted a Great Weekend of Education, Connection and Community
GLHF News, Living with a Bleeding Disorder
Bringing Families Together for a Weekend of Learning and Connection. More than 55 families from across Wisconsin gathered at the Kalahari Resort…
My First Factor Song
Living with a Bleeding Disorder
Sing along and teach through song! To the tune of “Alouette,” teach your toddler with hemophilia about bumps, bruises, “boo-boos,” and factor….
Comparative Tables of Bleeding Disorder Therapies by Brand
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
LA Kelley Communications provides downloadable tables that present clotting factor concentrates, novel therapies, gene therapies and adjunct therapies licensed for distribution in…
Podcast for VWD Patients
Health and Well Being, Living with a Bleeding Disorder, Women with Bleeding Disorders
The Canadian Hemophilia Society has a new podcast about von Willebrand Disease. Source: LA Kelley Communications, Inc., Communique, June 2026
CMS Rule Threatens Medicaid Protections for Bleeding Disorders
Advocacy & Legislation, Industry News & Research, Living with a Bleeding Disorder
The new rule states that having a “serious or complex medical condition,” such as bleeding disorder, will no longer automatically exempt a…
First-Ever Recommendations Call for Routine Iron Screening in People with Bleeding Disorders
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
A new MASAC recommendation states that all people with an inheritable bleeding disorder, regardless of sex, age, or bleeding disorder severity, be…
2026 Unite for Bleeding Disorders Walk – Register Now and Win a Prize!
GLHF News, Health and Well Being, Living with a Bleeding Disorder
Registration is open for GLHF’s annual Unite for Bleeding Disorders Walk at the Milwaukee County Zoo on Saturday, September 26! You can…
Mark Your Calendar: GLHF’s 15th Annual Milwaukee’s Best Bloody is Sunday, February 28!
GLHF News, Health and Well Being, Living with a Bleeding Disorder
Join us on Sunday, February 28, 2027, for GLHF’s 15th annual Milwaukee’s Best Bloody! We will raise critical funds for the bleeding disorders community…
We are Headed to GLHF’s Camp Klotty Pine, August 2-7
GLHF News, Health and Well Being, Living with a Bleeding Disorder
Get ready for an unforgettable summer. GLHF’s Camp Klotty Pine is back August 2–7. This special week is more than just camp…
How to Keep Summer Activities Safe for Kids with Bleeding Disorders
Health and Well Being, Living with a Bleeding Disorder
School is out for most children. Learn why a popular piece of backyard play equipment is riskier than you might think. Source:…