News
Making the Transition from Pediatric to Adult Care
Health and Well Being, Living with a Bleeding Disorder
Taking charge of your own health care can be daunting, but early preparation helps smooth the way. For people with bleeding disorders,…
National Hemophilia Foundation has a New Name: National Bleeding Disorders Foundation (NBDF)
Advocacy & Legislation, Industry News & Research, Living with a Bleeding Disorder
In 1948, the foundation got its start as simply “The Hemophilia Foundation” – then in 1956, the foundation formally incorporated into what…
Gene Therapy: One Down, But One to Go
Advocacy & Legislation, Industry News & Research, Living with a Bleeding Disorder
Roche is discontinuing its investigational hemophilia A gene therapy called SPK-8016. (SPK refers to Spark Therapeutics, which is carrying out trials) But clinical…
New Therapy for Hemophilia B and Inhibitors
Advocacy & Legislation, Industry News & Research, Living with a Bleeding Disorder
Alhemo™ (concizumab injection) is used for hemophilia B patients who have developed inhibitors, which prevent replacement factor IX therapies from working properly….
In For a Bad Surprise
Advocacy & Legislation, Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
As of 2022, the federal “No Surprises Act” protects people covered under group and individual health plans from receiving surprise medical bills…
Origins of Pharmacies
Health and Well Being, Living with a Bleeding Disorder
Specialty pharmacies are integral to expert factor delivery. But did you know that the first pharmacies were developed in the 8th century…
A Guide to Living with von Willebrand Disease is Back!
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
The world’s first book on the world’s most commonly inherited bleeding disorder, by Laureen A. Kelley and Paul Clement, is back in…
Advocacy Groups Voice Concerns Over Payer Matrix’s Self-Identification as Patient Advocacy Company
Advocacy & Legislation, Industry News & Research
Advocacy groups representing various disease communities voice concerns over Payer Matrix’s classification as a ‘Patient Advocacy Company.’ Read about their viewpoints and…
The 2023 Unite for Bleeding Disorders Walk is September 23. Register Today!
GLHF News
The Unite for Bleeding Disorders Walk is Saturday, September 23. There’s still time to register yourself and your team! We are nearly halfway to…
Does Hemophilia Mean Brittle Bones? Part 2.
Health and Well Being, Living with a Bleeding Disorder
by: Paul Clement In part one of this two-part series on bone health, we discussed osteoporosis and how it causes bones to…
Takeda Raises Issue with some BAXJECT® II reconstitution devices for use in conjunction with RECOMBINATE and RIXUBIS® in the U.S.
Industry News & Research
Takeda recently raised an issue with some BAXJECT® II reconstitution devices produced between October 2021 and January 2022 for use in conjunction…
GLHF Partners with Save One Life Hosts Wheels for the World Cycling Event September 19. Register Today to Help Raise Funds and Awareness!
GLHF News, Health and Well Being
Join us Tuesday, September 19, for a community bike ride as part of Save One Life’s 11th Annual Wheels for the World…
HFA’s New Resource for Blood Sisters and Menstruators
Living with a Bleeding Disorder, Women with Bleeding Disorders
The Hemophilia Federation of America (HFA) launched a valuable NEW toolkit, designed by Blood Sisters for Blood Sisters and menstruators. This resource…
Wisconsin All Copays Count Coalition Gains Momentum, Addresses Challenges of Copay Accumulator Adjustors
Advocacy & Legislation, GLHF News, Industry News & Research
In an effort to ensure that all copays count with insurance companies, and address the challenges of Copay Accumulator Adjustors, the Wisconsin…
#CampLife! Camp Klotty Pine Welcomed Campers Home for Another Successful Year!
GLHF News
Great Lakes Hemophilia Foundation (GLHF) has been sending children with bleeding disorders to summer camps for more than 20 years in states…
Confronting Depression in Older Men with Bleeding Disorders
Health and Well Being, Men with Bleeding Disorders
Pain and isolation can lead to depression—but help is available. Few who didn’t know him well would have pegged Barry Haarde as…
Legislation Restricting Accumulators and Maximizers Have No Impact on Premiums, According to a Global Health Living Foundation Analysis
Advocacy & Legislation, Industry News & Research
“Insurance companies assert that restricting accumulator and maximizer programs will cause higher health insurance premiums for everyone, but that claim is false….
The New WFH Shared Decision-Making Tool
Health and Well Being, Living with a Bleeding Disorder
In this video, World Federation of Hemophilia (WFH) Director of Research and Education Donna Coffin talks about the new WFH shared decision-making…
Better Bleeding Disorders Care Begins with You
Health and Well Being, Living with a Bleeding Disorder
NHF’s National Research Blueprint will ensure that lived experiences shape the future of bleeding disorders research and care. When it comes to…
Navigating Career Decisions When You Have a Bleeding Disorder
Health and Well Being, Living with a Bleeding Disorder
Experts answer your most pressing questions about navigating the job market with a bleeding disorder. Nick McRae-Cyr knew he wouldn’t be going…
Overcoming Loneliness: Strategies for Better Mental Health
Health and Well Being, Living with a Bleeding Disorder
Break out of solitary habits with these strategies. As we grow older, we’re more likely to experience loneliness. Because of hearing loss,…
Hemophilia and Heart Health: Balanced Cardiac Care
Health and Well Being, Living with a Bleeding Disorder
Cardiac care can be a delicate balancing act for people with bleeding disorders. The minute Pedro Estalilla came home from his job…
GLHF Website Updates, Including Medicare Changes, Gene Therapy, Pain Management and more
COVID-19, GLHF News, Health and Well Being, Living with a Bleeding Disorder
As we all know, the web is a pretty fast-moving place. In that fast-moving environment, GLHF likes to think that its website…
First Hemophilia A Gene Therapy Approved
Industry News & Research
The US Food and Drug Administration (FDA) approved Roctavian, a one-time gene therapy for adults with severe hemophilia A who do not…