News

Copay Accumulator Adjustor Programs (CAAPs) are a strategy used by insurers to redirect the value of manufacturer copay assistance – which is…

Cell therapy is a fascinating approach to treat hemophilia. But recently the clinical trials hit a stumbling block. What happened? Read more…

Dunn looks to diversity and advocacy as the incoming head of MASAC. One patient changed Dr. Amy Dunn’s entire career in her…

Takeda recently announced that the U.S. Food and Drug Administration (FDA) has approved VONVENDI® for routine prophylaxis to reduce the frequency of…

BioMarin’s investigational gene therapy for hemophilia A has not been approved for use; clinical trials are ongoing. Please click this link to read…

by: Kollet Koulianos and Amy NilesV This piece is a joint effort by Amy Niles, Executive Vice President at the PAN Foundation,…

Thank you to all of the state representatives and legislators who met with GLHF advocates for Wisconsin Legislative Day on January 26! Constituents…

A Statement from the National Hemophilia Foundation: Like many reading this note, NHF is profoundly heartbroken over the recent passing of Val…

The United States Food and Drug Administration’s Office of Patient Affairs is sharing recent highlights with the public from 2021 and is…

The phase 1/2 trial of SIG-001 for hemophilia A has been on an FDA clinical hold since July 2021. Sigilon Therapeutics recently…

This study designed to assess the link between physical activity levels, FVIII infusion, and occurrence of bleeding episodes. Results of a recently…

Dr. Glenn Pierce reflects on the passing of former NHF CEO, Val Bias. Val and I first got to know one another…

Former CEO spent decades inspiring the inheritable blood disorders community. NHF is deeply saddened to announce that former NHF CEO and community…

The latest breaking news from the All Copays Count Coalition. In response to additional rulemaking for the Centers for Medicare & Medicaid…

In this video, Tammuella Chrisentery-Singleton, M.D., Chief of Hematology for the Louisiana Center for Advanced Medicine, gives an overview of gene therapy…

Here’s what we know about these ultra-rare platelet disorders. Most bleeding disorders are relatively rare. Even the most common bleeding disorder, von…

Here’s everything you need to know about the most dangerous bleeds, including symptoms and preventive measures. by: Michael Hickey Members of the…

A roundup of films, TV shows and plays that have featured hemophilia and other bleeding disorders. Having a rare disease like hemophilia…

The National Hemophilia Foundation (NHF) today, in conjunction with the American Kidney Fund (AKF), Arthritis Foundation, and American Autoimmune Related Diseases Association (AARDA), released findings from…

The onset of childbirth and the postpartum period are times when women with von Willebrand disease (VWD) are at an increased risk…

Paper Highlights: Largest gene therapy study in hemophilia B achieved primary endpoint of non-inferiority in annualized bleeding rate after stable Factor IX…

This data was drawn from a phase 1/2 clinical trial of SPK-8011, Spark’s investigational gene therapy for hemophilia A. Spark Therapeutics announced…

On Tuesday, November 4, the U.S. Food and Drug Administration (FDA) placed the Pfizer/Sangamo hemophilia A gene therapy program, including the pivotal…

Historically, data on infants and toddlers (ITs) with von Willebrand disease (VWD), particularly relevant to bleeding patterns, has been lacking. To address…