The National Institutes of Health and National Center for Advancing Translational Sciences offer a wide range of information, resources, and services for patients and families. Many of these are dedicated to engaging the patient community throughout the translational science process:
Connecting Rare Disease Patients and Families with Informational Resources on COVID-19. The patient advocacy groups that partner with the Rare Diseases Clinical Research Network are working to support rare disease patients and families during the COVID-19 pandemic. Collected here are several resources they have developed to support their patient and family communities.
The Genetic and Rare Diseases Information Center (GARD) from NIH’s National Center for Advancing Translational Sciences has easy-to-understand information about rare or genetic diseases. You may also call 1-888-205-2311 (toll-free) to talk to a GARD information specialist.
The NCATS Toolkit for Patient-Focused Therapy Development has a collection of online resources that can help patient groups advance medical research for rare diseases.
The Rare Diseases Registry Program from NIH’s National Center for Advancing Translational Sciences offers online resources for patient groups on setting up and managing a successful registry.
The Undiagnosed Diseases Network (UDN) is a research study funded by NIH that aims to improve the diagnosis and care of patients with undiagnosed diseases. You can contact the UDN Coordinating Center at UDN@hms.harvard.edu or 1-844-746-4836 (toll-free).
ClinicalTrials.gov has information about clinical studies at NIH and other institutions that are currently enrolling patients. For more information on studies conducted at NIH, contact the Patient Recruitment and Public Liaison Office at prpl@mail.cc.nih.gov or 1-800-411-1222 (toll-free).