Global Genes – Allies in Rare Disease
Global Genes is a leading rare disease patient advocacy organization whose mission is simple: to eliminate the challenges of rare disease. They do this through developing educational resources, providing critical connections, and equipping advocates to become successful activists.
National Organization for Rare Disorders (NORD)
A federation of voluntary health organizations helping people with rare diseases; includes a database of patient support and health-related organizations.
The Genetic and Rare Diseases (GARD) Information Center is a program that provides the public with access to current, reliable, and easy to understand information about rare or genetic diseases in English or Spanish.
List of Advocacy Organizations for Rare Diseases (PDF)
The Genetic and Rare Diseases (GARD) Information Center has compiled a list of advocacy organizations that support rare diseases.
Contact Information for Rare Disease Advocacy Organizations (Excel)
The Genetic and Rare Diseases (GARD) Information Center has collected contact information for many advocacy organizations that support rare diseases.
Provides information and assistance to increase the capacity of genetic advocacy organizations through networking and education and assists individuals with genetic conditions.
Contact a Family
Rare disorder team brings together groups, families, and individuals of all ages who are affected by rare disorders, including those with late-onset conditions; Directory of Specific Conditions and Rare Disorders provides descriptions of hundreds of diseases and information on inheritance patterns, prenatal diagnosis, and related organizations; supports an international Web-based confidential linking service for individuals and families with rare disorders.
A database of toll-free numbers from the National Library of Medicine (NLM) with descriptions of more than 14,000 biomedical information resources, including organizations, databases, research resources, etc.
An online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.
The National Institutes of Health (NIH) established the Rare Diseases Clinical Research Network (RDCRN) to address the unique challenges of research on rare diseases.