RaDaR Serves as Starting Point for Creating Rare Disease Registry

Patient registries are a hot topic of rare disease research and many organizations are taking advantage of this resource by signing up their patient communities and connecting with researchers. Eric Sid, MD, program officer for the Office of Rare Diseases Research (ORDR), said it is difficult to estimate how…

Importance of Advocacy for Fabry Disease

If you or a family member has a rare disorder such as Fabry disease, you may want to get involved with health advocacy efforts. In general, these efforts promote health and access to care at individual and community levels. Here is more information about advocacy and ways in which…

Agency Unveils RaDaR to Help Patient Groups Develop Rare Disease Registries

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…