News

Takeda, in agreement with the U.S. Food and Drug Administration (FDA), has decided to voluntarily replace BAXJECT® II reconstitution devices produced by…

MASAC issued to two new documents during the NBDF’s Bleeding Disorders Conference this past August. The National Bleeding Disorders Foundation (NBDF) is…

Learn more about these treatments for inhibitors. One of the most problematic issues that can occur with hemophilia are inhibitors—a complication that happens…

Is donating plasma safe when you have a severe bleeding disorder? In most cases, the answer is yes! Plasma fully regenerates in…

In 1948, the foundation got its start as simply “The Hemophilia Foundation” – then in 1956, the foundation formally incorporated into what…

Roche is discontinuing its investigational hemophilia A gene therapy called SPK-8016. (SPK refers to Spark Therapeutics, which is carrying out trials) But clinical…

Alhemo™ (concizumab injection) is used for hemophilia B patients who have developed inhibitors, which prevent replacement factor IX therapies from working properly….

As of 2022, the federal “No Surprises Act” protects people covered under group and individual health plans from receiving surprise medical bills…

The world’s first book on the world’s most commonly inherited bleeding disorder, by Laureen A. Kelley and Paul Clement, is back in…

Advocacy groups representing various disease communities voice concerns over Payer Matrix’s classification as a ‘Patient Advocacy Company.’ Read about their viewpoints and…

Takeda recently raised an issue with some BAXJECT® II reconstitution devices produced between October 2021 and January 2022 for use in conjunction…

In an effort to ensure that all copays count with insurance companies, and address the challenges of Copay Accumulator Adjustors, the Wisconsin…

“Insurance companies assert that restricting accumulator and maximizer programs will cause higher health insurance premiums for everyone, but that claim is false….

The US Food and Drug Administration (FDA) approved Roctavian, a one-time gene therapy for adults with severe hemophilia A who do not…

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

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

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

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

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…

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…

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

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

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

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