News
How to Handle Constant Upsetting News
Health and Well Being
Advice from a social worker on how to stay grounded when current events feel heavy. Source: National Bleeding Disorders Foundation, HemAware, April…
Von Willebrand Disease Treatment: What’s New and Next?
Industry News & Research, Living with a Bleeding Disorder
Advances include improved access to prophylaxis, multiple subcutaneous drugs in development, and research looking at better ways to personalize treatment. Source: National…
Temporary Global Stockout of Hemgenix: A Message to the Hemophilia B Community from CSL Behring
Health and Well Being, Industry News & Research
Dear Hemophilia B Community, We are writing to share an important update on the availability of HEMGENIX® (etranacogene dezaparvovec-drlb). CSL is currently experiencing…
Registration is Now Open for the 2026 Wisconsin Bleeding Disorders Conference
GLHF News
Registration is now open for the 2026 Wisconsin Bleeding Disorders Conference, taking place June 5–7 at the Kalahari Resort in Wisconsin Dells….
NBDF & Save One Life, Inc. Pair Up to Help Kids with Bleeding Disorders
Health and Well Being, Living with a Bleeding Disorder
Save One Life, Inc., helps kids with bleeding disorders in countries where access to treatment and specialized care is limited. NBDF is…
Hemophilia Logic
Health and Well Being, Living with a Bleeding Disorder
by: Diane Horbacz, illustrated by Jarrett Krosoczka Designed to help teach your child age seven to twelve about his or her bleeding…
Books for Children: My First Factor Boxed Gift Set
Health and Well Being, Living with a Bleeding Disorder
by: Shannon Brush The world’s first toddler books for children with hemophilia reviews basic concepts in colorful, chunky books just right for…
Success as a Hemophilia Leader
Health and Well Being, Living with a Bleeding Disorder
World’s first guide to founding, managing, and growing a grassroots hemophilia organization or improving an existing one. Advice on creating vision and…
Empower Yourself About Hemophilia
Health and Well Being, Living with a Bleeding Disorder
A hemophilia diagnosis can upset your beliefs, feelings, and life. This book offers simple, concrete ways to regain feelings of control through…
A Guide to Living with von Willebrand Disease (4th ed.)
GLHF News
The world’s first book on the world’s most commonly inherited bleeding disorder. Topics include learning to cope with VWD, inheritance, the medical…
Teach Your Child About Hemophilia
Health and Well Being, Living with a Bleeding Disorder
Explains what your child with hemophilia may be thinking at different ages when experiencing a bleed, receiving an infusion, visiting the hospital….
Raising a Child with Hemophilia: A Practical Guide for Parents
Health and Well Being, Living with a Bleeding Disorder
by: Kelley and Paul Clement World’s first parenting book on hemophilia written by a parent of a child with hemophilia, now updated…
GLHF’s 14th Annual Milwaukee’s Best Bloody Raised Critical Funds for the Bleeding Disorders Community!
GLHF News
The 14th annual Milwaukee’s Best Bloody competition was a great success! Our new venue at 3rd Street Market Hall and new vodka partner Drink…
Government Relations Update
Advocacy & Legislation, Industry News & Research, Living with a Bleeding Disorder
Good news for the bleeding disorders community in the House of Representative’s FY26 Labor, Health and Human Services appropriations bill, which included…
NBDF’s Commitment to Shared Decision-Making and Evidence-Based Access in Gene Therapy
Gene Therapy, Industry News & Research
The current coverage environment can create challenges for individuals seeking to explore gene therapy as a potential treatment option, as well as…
Honoring Dr. Lynn Malec – A Distinguished Clinician, Research and Advocate for the Bleeding Disorders Community
Advocacy & Legislation, Gene Therapy, GLHF News, Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Great Lakes Hemophilia Foundation (GLHF) grieves the recent loss of Dr. Lynn Malec, a beloved Wisconsin Hematologist. Her life and work profoundly…
Take the Next Step at Camp Klotty Pine – LIT Applications Open!
GLHF News
Calling all former Camp Klotty Pine campers ages 15–18 who are ready to step into leadership! If you’ve experienced the magic of camp,…
Camp Klotty Pine – Where Kids Can Be Kids
GLHF News, Living with a Bleeding Disorder
August 2–7 | Cambellsport, WI For many families in the bleeding disorders community, summer camp can feel complicated. Questions about safety, treatment schedules,…
Advocates Addressed Lawmakers About Affordable Healthcare, Comprehensive Insurance Coverage and Medically Necessary Treatment at GLHF’s Wisconsin Advocacy Day
Advocacy & Legislation, GLHF News
At the end of January, advocates from across Wisconsin gathered at the State Capitol for GLHF’s annual Wisconsin Advocacy Day. Patients, parents, caregivers, and HTC providers…
These Dietary Supplements Can Be Dangerous
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Certain common “natural” remedies can interfere with your body’s ability to clot. Source: National Bleeding Disorders Foundation, HemAware, February 2026
Retreats for Men with Bleeding Disorders
GLHF News
Here’s a snapshot of the activities participants enjoyed at three men’s retreats held at chapters across the country. Source: National Bleeding Disorders…
How to Get Help for Anxiety and Depression at Midlife
Living with a Bleeding Disorder
Learn how to spot emotional warning signs — and what steps to take. Source: National Bleeding Disorders Foundation, HemAware, February 2026
NBDF and WFH Statement on Severe Adverse Event with Marstacimab Rebalancing Agent for Hemophilia
Industry News & Research
(Editors note: January 22, 2026. Following publication of this joint statement from the National Bleeding Disorders Foundation (NBDF) and the World Federation…
Government Relations Update: House Reintroduces HELP Copays Act
Industry News & Research
Good news: the House has reintroduced the HELP Copays Act, aimed at ending copay accumulator adjustor programs and copay maximizers. Learn how…