News
Beware Healthcare
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
The Coalition for Hemophilia B has summarized threats to healthcare from the current administration. What’s at risk? Currently, more than 24 million…
Prophy Treatment Research is Promising
Living with a Bleeding Disorder
Roche announced positive data from its Phase I/II NXTAGE trial of NXT007, a next-generation investigational therapy intended as a prophylactic treatment option…
PBM Podcast
Health and Well Being, Living with a Bleeding Disorder
Listen to a podcast on the power of PBM — pharmacy benefit managers. First exposed in LA Kelley Communications’ issue of PEN…
HemoLife Podcast
Health and Well Being, Living with a Bleeding Disorder
This podcast, hosted by L.A. Aguayo, a man with hemophilia who is an elite body builder, encourages conversations among members of the…
GLHF’s Bleeding Disorders Conference Offered a Weekend of Connection and Community
GLHF News, Living with a Bleeding Disorder
Earlier this summer, families from across Wisconsin gathered at the Kalahari Resort in Wisconsin Dells for GLHF’s annual Wisconsin Bleeding Disorders Conference….
Camp Klotty Pine Counselor Spotlight – Meet Julia and Maria
GLHF News
Meet Julia Hometown: Janesville, WI How many summers have you been coming to Camp? This will be my 9th summer! What’s your…
What’s Next in Bleeding Disorders Care?
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
The National Bleeding Disorders Foundation’s 77th annual Bleeding Disorders Conference will take place from August 21-23, 2025. We hope you join us…
Get Ready for Camp Klotty Pine – August 3-8!
GLHF News
The countdown has begun, and the camp experience truly starts before campers even steps onto the bus. Preparing together can help your…
Congress Needs to Hear from You!
Advocacy & Legislation, Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
In conjunction with NBDF and other national partners, GLHF encourages you to take action now. Right now, US Senators are debating a…
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…