News
Is Your Camper Ready for Camp Klotty Pine? Are You? Camp Klotty Pine Is Just Around the Corner – August 3-8!
GLHF News
The countdown has begun, and the camp experience truly starts before your camper even steps onto the bus. Preparing together can help…
Your Voice is Needed: Protect Medicare, Medicaid, ACA, and SNAP
Advocacy & Legislation, Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
A Message from Kim Phelan, CEO, The Coalition for Hemophilia B and Coalition Member of BD SUMHAC Dear Community Members, No matter…
Breaking Barriers in Bleeding & Thrombotic Disorders in Women
Living with a Bleeding Disorder, Women with Bleeding Disorders
The 2025 Research Journal Club brings together experienced researchers, new research fellows, and lived experience experts to explore critical topics in bleeding…
Factor X Deficiency: Understanding This Rare Bleeding Disorder
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Check out this guide to why the condition occurs, how to recognize symptoms, and what you can do to manage it.
What’s Hurting Your Mental Health, and What You Can Do About It
Health and Well Being, Living with a Bleeding Disorder
These five factors can negatively affect you, especially if you have a chronic health condition .
NEJM Publishes Follow-up Data on Hemophilia B Gene Therapy Product
Gene Therapy, Industry News & Research
The New England Journal of Medicine (NEJM) recently published long-term follow up data on patients who have previously received the hemophilia B gene…
New Paper Features Hemophilia Gene Editing Lexicon
Gene Therapy, Industry News & Research
NBDF, ASGCT, and ISTH publish a new paper offering a standardized lexicon to guide communication on gene editing in hemophilia research and…
Wisconsin All Copays Count Coalition Urges Action on Cole’s Act
Advocacy & Legislation, Living with a Bleeding Disorder
Oregon, North Dakota, Indiana, and Vermont join 19 other states that have passed copay accumulator bans. As the national momentum to protect…
From Intern to Board President – Dave Amoroso Shares His Experience and Perspective
Advocacy & Legislation, GLHF News
by: Danielle Lennie Dave Amoroso took an internship position at Great Lakes Hemophilia Foundation (GLHF) in 1985 while attending Marquette University. “I…
Get with the Beats!
Health and Well Being, Living with a Bleeding Disorder
2025 Beats Music Application – Nashville, TN (July 16, 2025 – July 20, 2025) – Apply by June 4. Travel scholarships available!…
Legislative Update: AB173, SB203, Cole’s Act, Copay Accumulator Adjusters, PBMs
Advocacy & Legislation, GLHF News
The average annual cost of clotting factor therapies for a person with severe hemophilia is roughly $300,000. For patients with inhibitors, expenses…
Experience Confidence, Connection and Adventure – Join us at Camp Klotty Pine, August 3-8!
GLHF News
Looking for an unforgettable summer experience for your child? Camp Klotty Pine, held August 3–8, offers so much more than a traditional…
How Do You Best Learn About Your Bleeding Disorder?
Health and Well Being, Living with a Bleeding Disorder
There are many ways to learn, and to learn about your bleeding disorder. Our society, though, is biased toward visual learning, because…
Changing Policies Mean Take Advocacy Action Now!
Advocacy & Legislation, Living with a Bleeding Disorder
The Coalition for Hemophilia B has created an excellent Action Sheet to help give you ideas and action items to help protect…
Know Your Patient Assistance Programs
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
There are a great range of programs that offer financial assistance and factor for qualified patients. Co-pay assistance, free factor, scholarships and…
Staying Fit When You Have a Bleeding Disorder
Health and Well Being, Living with a Bleeding Disorder
Physical activity is beneficial for all kinds of reasons. Learn about ways you can stay fit safely and thrive by living a…
Ask a Social Worker: How Can People with a Bleeding Disorder Find an Inpatient Substance Use Treatment Program?
Health and Well Being, Living with a Bleeding Disorder
A national coalition formed in 2022 can help you get the care you need for a substance use disorder or mental health…
Curious About Clinical Trials for Hemophilia and Other Bleeding Disorders?
Industry News & Research
Learn why these research studies are important for the development and approval of new treatments, and how to find more information.
Slowdown of Gene Therapy Research Spurs Call to Action
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
Global organizations unite to urge collaborative approaches to reducing barriers to advancement of care. The National Bleeding Disorders Foundation (NBDF) has joined…
Two Products to be Discontinued by Takeda
Industry News & Research, Living with a Bleeding Disorder
Takeda announced that it will globally discontinue two of its hemophilia A treatments: Hemofil M, a plasma-derived therapy, and Recombinate, the first…
Important New Product Launched by Sanofi
Industry News & Research, Living with a Bleeding Disorder
The U.S. FDA has approved Sanofi’s Qfitlia (fitusiran), the first antithrombin-lowering therapy for routine prophylaxis to prevent or reduce the frequency of…
Raising a Child with Hemophilia is Back!
Health and Well Being, Living with a Bleeding Disorder
LA Kelley Communications’ flagship book Raising a Child with Hemophilia is available to download free as a PDF from its website. First…
Milwaukee’s Best Bloody Helps Raise Critical Funds for the Bleeding Disorders Community of WI!
GLHF News
More than 350 people and 10 Milwaukee-area bars and restaurants attended GLHF’s premier fundraising event, Milwaukee’s Best Bloody, on April 13. Our…
HHS Terminates Division of Blood Disorders and Public Health Genomics
Advocacy & Legislation, GLHF News, Industry News & Research, Living with a Bleeding Disorder
by: Danielle Leitner Baxter We need your help! Contact your representatives today! On April 1, the US Department of Health and Human…