News
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….
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…
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…
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…
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….
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…
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…
Important: Action Needed Regarding Medicaid and Badgercare Eligibility
Advocacy & Legislation, Industry News & Research
As you may have heard, the Medicaid and CHIP (called Badgercare in Wisconsin) programs are re-starting eligibility reviews. Community members may receive…
Advocates Met with State Reps for WI Legislative Day – All Copays Count Legislation is Top Priority
Advocacy & Legislation, GLHF News
Community advocates gathered on March 1st at the State Capitol for GLHF’s Wisconsin Legislative Day. We shared stories of life with a bleeding…
Medicaid and CHIP Continuous Enrollment Unwinding
Advocacy & Legislation, Industry News & Research
Get information on your state’s plan to restart yearly Medicaid and Children’s Health Insurance Program (CHIP) eligibility reviews. Do you or a…
NHF Assumes Leadership of the American Plasma Users Coalition
Advocacy & Legislation, Industry News & Research
NHF Assumes Leadership of the American Plasma Users CoalitionThe organization’s public policy representatives offer new perspectives in the mission for blood and…
Hemophilia Federation of America Outlines Year-End Omnibus Spending Bill with Important Health Provisions Affecting Medicaid, Telehelath, New Drugs and More
Advocacy & Legislation, Industry News & Research
Hemophilia Federation of America’s Word from Washington outlines a massive year-end omnibus spending bill containing numerous important health provisions affecting Medicaid, telehealth,…
Safeguarding an Essential Treatment for Heavy Periods – What Contraception Bans Would Mean for the Bleeding Disorders Community.
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
In June, when the Supreme Court overturned Roe v. Wade and ended the constitutional right to abortion, women’s health advocates around the…
CDC Public Health Webinar on Blood Disorders – GLHF’s Kaveh Shabtaie Featured
Advocacy & Legislation, GLHF News
The Centers for Disease Control and Prevention’s (CDC) Division of Blood Disorders offers an ongoing Public Health Webinar Series on Blood Disorders. The…
Rare Disease Day is Feb. 27! Dr. Califf, Commissioner of Food and Drugs, Kicks Off This Year’s Theme, “Intersections with Rare Diseases – A Patient Focused Event”
Advocacy & Legislation, Living with a Bleeding Disorder
The Food and Drug Administration (FDA) has announced that FDA’s Rare Disease Day is Monday, February 27. Registration is open for this…