Agency Unveils RaDaR to Help Patient Groups Develop Rare Disease Registries
May 28, 2019 07:00 am | Larry Luxner
RaDaR, the catchy new name for the U.S. government-run Rare Diseases Registry Program, aims to help patient advocacy groups with limited resources build their own disease registries. The site was developed by the National Center for Advancing Translational Sciences (NCATS), a division of the National Institutes of Health(NIH). Anne Pariser, MD, director of the Office […]
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IMR-687, an investigational therapy for sickle cell disease, has been granted Fast Track designation by the U.S. Food and Drug Administration (FDA). It’s currently being evaluated in a Phase 2a trial in the U.S. and U.K. The Fast Track process is meant to get new therapeutics that treat serious conditions and fill an unmet medical need […]
RaDaR, the catchy new name for the U.S. government-run Rare Diseases Registry Program, aims to help patient advocacy groups with limited resources build their own disease registries. The site was developed by the National Center for Advancing Translational Sciences (NCATS), a division of the National Institutes of Health(NIH). Anne Pariser, MD, director of the Office […]
Novartis‘ Solutions to Empower Patients (STEP) program will fund five nonprofit organizations that address some of the most pressing concerns in the sickle cell disease (SCD) community. Nearly $250,000 will be divided up among patient advocacy organizations and research institutions. Started in 2017, the STEP program funds innovative efforts that empower patients with unmet needs […]