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The National Hemophilia Foundation (NHF) has opened a grant program to support the local groups and chapters that work with bleeding disorder families, and have watched as their revenue sources dry up during the COVID-19 pandemic. Called the COVID-19 Fund Bridge Grant program, the effort is open to…

Nearly a year has passed since Hurricane Ian wreaked havoc on southwest Florida, leaving my hometown of Punta Gorda and its neighboring communities in disrepair. As recovery efforts continue, the renovation of my condo has been stalled due to a failure by our association to reach an agreement with…

Spontaneous and joint bleeds, and limits on physical activity are evident in people with severe hemophilia A even when they adhere to and remain on preventive treatment, an analysis of global, real-world data showed. These findings highlight the need for additional alternative therapies for patients with severe disease. The study,…

Sometimes I am overwhelmed when I think about the hemophilia journey my sons are traveling. My first memories about this date to June 1996, when my first son, Julian, was born and diagnosed with severe hemophilia A. The early days of learning how to access a port, and later,…

Some $80.3 million in financing will support the first clinical trial of Sigilon Therapeutics’ new hemophilia A cell therapy candidate, SIG-001, the company said. The trial is expected to begin by June. Last August, the U.S. Food and Drug Administration (FDA) granted the potential cell therapy…

I recently had the honor of attending the National Bleeding Disorders Foundation’s (NBDF) Bleeding Disorders Conference in Aurora, Colorado. I’m grateful for a travel grant I received from the NBDF that made it possible for me to attend. The conference was a fabulous and energizing mixture of connecting with…

Recent advances in gene therapy approaches to treat hemophilia B were recently announced by uniQure. The company achieved “substantial progress in advancing our lead program in hemophilia B,” Matthew Kapusta, CEO of uniQure, said in a press release. The company reacquired the development and commercial rights to…

A recent survey has shown that the use of appropriate standardized outcome measures of hemophiliac patient treatments in routine clinical practice are not the norm. But implementing these measures could promote more effective personalized therapeutic approaches and reduce treatment-related costs. Hemophilia is a complex disease with a major impact on the…