News
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…
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…
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…
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…
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…
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…
Statement: HFA Responds to Latest Gene Therapy Announcement
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
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…
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…
How to Keep Summer Activities Safe for Kids with Bleeding Disorders
Health and Well Being, Living with a Bleeding Disorder
Learn why a popular piece of backyard play equipment is riskier than you might think. It’s summertime, and kids are out of…
It is Family: A Conversation with Saylor Behrens
Health and Well Being, Living with a Bleeding Disorder
When Saylor Behrens’ biology professor told her class that hemophilia is the result of incest, she grew angry. She knew better. Her…
Does Hemophilia Mean Brittle Bones? Part 1.
Health and Well Being, Living with a Bleeding Disorder
by: Paul Clement Many studies have linked having hemophilia to a significantly increased risk of developing osteoporosis, or “holey bones” (osteo means “bone”…
The Low Cost of Being Female with a Bleeding Disorder?
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Female hemophilia A patients and carriers have more frequent bleeds than males, yet a smaller proportion receive factor to prevent or stop them, a U.S….
New Survey Spotlights Ongoing Concerns for People Living with Hemophilia B
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Carefully controlled schedules. Undercurrents of uncertainty. Persistent pain. People who are living with hemophilia B, and those who love them, face a…
Guilt in Mothers of Children with Hemophilia Focus of New Study
Health and Well Being, Living with a Bleeding Disorder
Researchers from the Children’s Healthcare of Atlanta and Emory University recently published the results of a small study investigating the subject of…
FDA approves once-weekly ALTUVIIIO™, a new class of factor VIII therapy for hemophilia A that offers significant bleed protection
Industry News & Research, Living with a Bleeding Disorder
FDA approves once-weekly ALTUVIIIO™, a new class of factor VIII therapy for hemophilia A that offers significant bleed protection Paris and Stockholm – February 23, 2023 – The U.S. Food and Drug Administration (FDA) has…
From Patient to Physician
Health and Well Being, Living with a Bleeding Disorder
Start the Conversation: Dr. Aaron Cheng In this video, Dr. Aaron Cheng, a resident in internal medicine at Massachusetts General Hospital, shares…