News

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…

Read More

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…

Read More

#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…

Read More

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…

Read More

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….

Read More

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…

Read More

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…

Read More

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…

Read More

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,…

Read More

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…

Read More

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…

Read More

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…

Read More

As Part of Medicaid “Unwinding,” Disenrollments Are Now Underway in about 40 States. Will You Lose Your Medicaid? Learn What You Can Do!

Health and Well Being, Industry News & Research

Reports from 26 States Show More than 1.5 M Beneficiaries Have Already Been Disenrolled. Wisconsin residents: Congress told states it was time…

Read More

Bleeding Disorders: What Your Pain Is Trying to Tell You

Health and Well Being, Living with a Bleeding Disorder, Pain Management

An overview of the types of pain you might experience, what you can do to manage pain at home, and when to…

Read More

Rate of Coverage Losses from Medicaid Unwinding Continues to Cause Alarm

Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

Concern grows over the mounting tally of Medicaid coverage losses impacting people who remain eligible for the program. Read how federal regulators…

Read More

FDA Approves First-Ever Nonprescription Oral Contraceptive

Health and Well Being, Industry News & Research

The new approval will allow consumers to purchase this oral contraceptive medication without a prescription at stores and online. The U.S. Food…

Read More

Patient Safety in the Age of Gene Therapy

Industry News & Research

This paper takes a broad, holistic view of patient safety in the era of hemophilia gene therapy. After several decades of preclinical…

Read More

Statement: HFA Responds to Latest Gene Therapy Announcement

Industry News & Research

Yesterday, the U.S. Food and Drug Administration approved Roctavian (valoctocogene roxaparvovec), the first gene therapy for hemophilia A. This new treatment option, for the treatment of…

Read More

Sanofi Announces Data Showing Effective Bleed Protection in Children with Severe Hemophilia A

Industry News & Research

Pivotal data from the Phase 3 XTEND-Kids study evaluating ALTUVIIIO™ [Antihemophilic Factor (Recombinant), Fc-VWF-XTEN Fusion Protein] once-weekly prophylaxis, a factor VIII replacement…

Read More

FDA Approves BioMarin’s Gene Therapy for Adults with Severe Hemophilia A

Industry News & Research

BioMarin Pharmaceutical Inc. today announced the U.S. Food and Drug Administration approved ROCTAVIAN™ (valoctocogene roxaparvovec-rvox) gene therapy for the treatment of adults…

Read More

Patient Safety in the Age of Gene Therapy a Central Focus of Review Article

Industry News & Research

After several decades of preclinical and clinical research, pitfalls and progress, gene therapies for hemophilia A and B have become a reality…

Read More

Susan Skinner Memorial Fund Scholarship Program is Open

Advocacy & Legislation, Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

that the call for applications for the Susan Skinner Memorial Fund (SSMF) Scholarship program is now open! Please spread the word among…

Read More

An Alarming Rate of Coverage Losses

Advocacy & Legislation, Industry News & Research

Early data on Medicaid “unwinding” shows an alarming rate of coverage losses for enrollees who may still be eligible. Colorado and Texas…

Read More

It’s Time to Prepare for Camp! Camp Klotty Pine is August 7-12.

GLHF News

Is your camper prepared? Are you?It’s time to start preparing for Camp Klotty Pine as we count down the days to camp…

Read More