News
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…
GLHF’s Camp Klotty Pine is Back, August 2-7. Register Today!
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, and registration is officially open! This special week…
How to Keep Summer Activities Safe for Kids with Bleeding Disorders
Health and Well Being, Living with a Bleeding Disorder
School will be out soon for most children. Learn why a popular piece of backyard play equipment is riskier than you might…
How to Choose the Right Hemophilia Treatment Options for You
Health and Well Being, Living with a Bleeding Disorder
In a rapidly changing hemophilia treatment landscape, shared decision-making helps patients and providers choose the option that fits best. Source: National Bleeding…
Ask a Social Worker
Health and Well Being, Living with a Bleeding Disorder
The daily news can be overwhelming, especially so for families already dealing with hospital visits, treatments, complications and soaring medical bills. How…
Understanding Grief
Health and Well Being, Living with a Bleeding Disorder
Lifelines for Health was the first national publication for those in the bleeding disorders community with an inhibitor. Its content expanded to include…
Boundless B Podcast: The Trail of AIDS
Health and Well Being, Living with a Bleeding Disorder
Dana Kuhn’s legendary story moves from private devastation to investigative public accountability. After losing his wife to AIDS when Dana unknowingly contracted…
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…
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…
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…
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…
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…
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
Resources for Caregivers
Health and Well Being, Living with a Bleeding Disorder
The holidays can be a particularly hectic time for caregivers in the bleeding disorders community. This month’s Resource Roundup has resources on…
Interim Data from Sub-Q Therapy for VWD
Health and Well Being, Industry News & Research
Star Therapuetics has shared an update on its ongoing clinical trial of VGA039, an investigational therapy for von Willebrand disease. The therapy…
Get an Up Close Look at What Goes On at an HTC
Health and Well Being, Living with a Bleeding Disorder
HemAware magazine spent a morning at UTHealth’s Gulf States Hemophilia and Thrombophilia Center in Houston to see this unique comprehensive care model…
NBDF Launches Educate to Elevate
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
The National Bleeding Disorders Foundation (NBDF) is launching Educate to Elevate, a multi-year initiative to raise public awareness, educate communities, and improve healthcare…
Managing Joint Pain as You Age
Health and Well Being, Living with a Bleeding Disorder, Pain Management
For people with a bleeding disorder, exercise and proactive care can keep pain in check. Source: National Bleeding Disorders Foundation, HemAware, November…