News
Attention Community Advocates – Your Voice is Needed for GLHF’s 2025 Advocacy Day!
Advocacy & Legislation, GLHF News
We need your support more than ever to help educate more than 30 newly elected officials about the challenges of living with…
Washington Days 2025, NBDF’s Annual Advocacy Event, is March 5-7
Advocacy & Legislation, Industry News & Research
Are you ready to advocate for the bleeding disorders community? Join us at Washington Days 2025 for a powerful and impactful experience. Learn…
New Video Series: Voices for Policy Change
Advocacy & Legislation, Living with a Bleeding Disorder
Voices for Policy Change is a video series created by the National Bleeding Disorders Foundation (NBDF) designed to educate, empower and mobilize the community about important legislative…
Can Someone with a Bleeding Disorder Join the Military?
Advocacy & Legislation, Living with a Bleeding Disorder
When you turn 18, you need to sign up with Selective Services. Will the armed forces accept someone with a bleeding disorder?…
Critical Policy Updates: Medicaid Changes, ACA Credits, and More
Advocacy & Legislation, Health and Well Being, Industry News & Research
Dive into NBDF’s August 2024 Government Relations Update for essential information on Medicaid unwinding, ACA premium tax credits, NIH reform, and state-level…
A Nurse Practitioner Decodes Medical Research for the ’Gram
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
Maya Bloomberg has drawn thousands of social media followers by making information on hemophilia and sickle cell anemia easier to understand. Source:…
Where is Your HTC?
Advocacy & Legislation, Living with a Bleeding Disorder
Do you need an HTC? A new HTC? Do you need to find one when you travel across the US? Check out the…
Huge Win for Advocacy Groups as People with Bleeding Disorders See Increased Equity and Access to Behavioral Health Facilities
Advocacy & Legislation, Health and Well Being
The Bleeding Disorders Substance Use and Mental Health Access Coalition, National Bleeding Disorder Foundation (NBDF), and Hemophilia Federation of America (HFA), are…
What is “Health Equity”?
Advocacy & Legislation, Living with a Bleeding Disorder
Unfortunately, health inequities are a sad reality in the United States health care system. Together with the inheritable blood and bleeding disorders…
NBDF Celebrates HHS Final Rule Strengthening Protections Against Disability Discrimination
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
NBDF Celebrates HHS Final Rule Strengthening Protections Against Disability Discrimination Celebrating a monumental victory for individuals with disabilities across the United States. …
Privacy Please!
Advocacy & Legislation, Living with a Bleeding Disorder
Patient privacy continues to be a huge concern worldwide, especially in the healthcare field, and especially online. The states of Washington, Nevada,…
The Joy of Lobbying the Senate on Behalf of my Sons with Hemophilia
Advocacy & Legislation, Living with a Bleeding Disorder
How I advocated for the bleeding disorders community on Capitol Hill. by: Joe MacDonald Last Thursday, I visited Washington, D.C., to join my…
Bleeding Disorders Awareness Month
Advocacy & Legislation, GLHF News, Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Each March, the community calls attention to inheritable blood and bleeding disorders during Bleeding Disorders Awareness Month. This time gives patients and…
GLHF Testifies Before the Assembly Health Committee About Harmful Insurance Practices Including PBMs and Copay Accumulator Adjuster Programs
Advocacy & Legislation, GLHF News
Great Lakes Hemophilia Foundation and community advocates spent the day in Madison on February 14 educating legislators and showing support for the Pharmacy Benefit…
NBDF Government Relations Update
Advocacy & Legislation
Community members and policymakers at the state and federal levels nationwide are starting conversations about copay accumulators, product safety, and more, with…
Court Overturns Accumulator Adjuster Rule
Advocacy & Legislation, Living with a Bleeding Disorder
Court orders HHS to revise federal regulations permitting harmful copay accumulators In a preliminary victory for consumers, a federal judge in the…
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…
Know Who Represents You
Advocacy & Legislation
Your voice matters! It’s important that policymakers, elected officials, and other legislative staff hear from people with bleeding disorders in order to…
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…
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….