Gathered here is a collection of resources that aim to support and inform people who are affected by or care for others affected by rare diseases.
National Organization for Rare Disorders (NORD)
- “NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.” NORD’s website provides detailed descriptions of numerous rare diseases and disorders. It is also place to connect with others with rare diseases, discover research opportunities, and find advocacy resources for patients and families.
Genetic and Rare Diseases (GARD) Information Center
- GARD provides the public with access to current information about rare or genetic diseases in both English and Spanish. GARD is a reliable resource for patients and families affected by rare disease, medical professionals, and advocacy leaders alike.
- “GeneCards is a searchable, integrative database that provides comprehensive, user-friendly information on all annotated and predicted human genes. It automatically integrates gene-centric data from ~125 web sources, including genomic, transcriptomic, proteomic, genetic, clinical and functional information.”
Rare in Common
- Rare in Common features an Emmy-nominated documentary that follows the lives of individuals affected by rare disease, focusing on the common features of each patient/family experience. The website also features several podcasts, highlighting their effort to rethink what it means to be rare.
- A site dedicated to resources and support for people who are undiagnosed.
Rare disease resource list
For a complete list of national Rare Disease Organizations, click here.