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 LEMS Patients

Health advocates promote patient health and access to medical care. If you or a family member has a rare disease such as Lambert-Eaton myasthenic syndrome (LEMS), it could be helpful to learn about health advocacy and how to get involved. About LEMS LEMS is a progressive autoimmune disorder that affects…

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…