News
The Importance of Telehealth
Health and Well Being, Living with a Bleeding Disorder
Interview with Jacob Murcock, Chapter Executive Director, Nevada It was a pleasure for the foundation to sit down with Jacob to learn…
World Hemophilia Day 2024 Theme Revealed
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
On April 17, 2024, the global bleeding disorders community will come together to celebrate World Hemophilia Day. The theme of the event…
WFH Humanitarian Aid Program supports Syrian refugees (Part 1: Karam’s story)
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
The World Federation of Hemophilia (WFH) provides care to people with bleeding disorders (PWBDs) all around the world—including individuals living in refugee…
New Study Looks at Hemophilia Survival Rate Disparities
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Black men experience much lower hemophilia survival rates compared to their white counterparts. Results of a new study published in the journal Haemophilia are…
Bypassing Agents for Hemophilia Explained
Industry News & Research, Living with a Bleeding Disorder
Learn about bypassing agents as treatment for inhibitors and whether they might be right for you. One of the most problematic issues…
The Parent-Teacher Relationship
Health and Well Being, Living with a Bleeding Disorder
It’s normal for anyone to be concerned at the thought of a child with hemophilia in the classroom, but it can especially…
Healthy Living Items Assistance
Health and Well Being, Living with a Bleeding Disorder
Healthy Living Items Assistance helps individuals in the bleeding disorders community with the cost of medically necessary items that are not affordable…
Depression, anxiety prevalent among hemophilia patients: Study
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder, Men with Bleeding Disorders
Analysis focused on 90 men with hemophilia A and B in Turkey by Lindsey Shapiro, PhD | September 15, 2023 About a quarter (24.4%) of…
Court Rules in Favor of Patients Regarding Copay Accumulator Adjustor Programs
Advocacy & Legislation, Living with a Bleeding Disorder
In a major victory for patients who depend on prescription drugs, Judge John D. Bates of the U.S. District Court for the…
Learn More About Patient Assistance Programs
Advocacy & Legislation, Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
There are several programs and resources designed to assist individuals and families grappling with the financial burden of living with an inheritable…
Five Ordinary Items That Are Unique to Our Hemophilia Home
Living with a Bleeding Disorder
by: Alliah Czarielle Living with hemophilia entails some interesting household items In the hustle and bustle of daily life, we often overlook the…
Gynecologists Have Significant Part to Play in Shrinking Diagnostic Gaps
Industry News & Research, Living with a Bleeding Disorder, Women with Bleeding Disorders
A new commentary, “Closing the Diagnostic Gap in Adolescents and Young Adult Women with Bleeding Disorders,” published in the August issue of…
Ask a Social Worker: How Can I Heal From Medical Trauma?
Health and Well Being, Living with a Bleeding Disorder
Advice on how to cope with post-traumatic stress disorder that’s related to a medical event. Ask a Social Worker is a monthly…
All About Bypassing Agents for Hemophilia
Industry News & Research, Living with a Bleeding Disorder
Learn more about these treatments for inhibitors. One of the most problematic issues that can occur with hemophilia are inhibitors—a complication that happens…
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…
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…