Rare & Genetic Disorder Support Resources (USA)
The organizations below provide nationwide support, education, patient advocacy, genetic counseling resources, financial assistance guidance, and community programs for individuals and families affected by rare diseases and inherited genetic conditions. Need urgent help? Call 911 or visit the nearest emergency room if someone experiences severe breathing problems, seizures, loss of consciousness, sudden paralysis, or other life-threatening symptoms.
USA only. If you or someone you know is in immediate danger, call 911. If you need someone to talk to right now, call or text 988.
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Rare and genetic conditions can be hard to navigate—diagnosis, specialists, and support can take time. Saving or sharing these resources can help families find trusted programs and assistance.
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Nationwide Rare & Genetic Disorder Support Resources
- Visit
National Organization for Rare Disorders (NORD)
NORD offers patient assistance programs, educational resources, rare disease advocacy, medication assistance guidance, and connections to support communities across the United States. Patient Assistance Programs and Rare Disease Database. - Visit
Genetic and Rare Diseases Information Center (GARD) – NIH
GARD provides trusted, research-based information about rare and genetic diseases, diagnostic support resources, and links to clinical trials and patient advocacy groups. Phone: 888-205-2311. Email and online information specialists available.Call: 888-205-2311 - Visit
Genetic Alliance
Genetic Alliance supports individuals and families affected by genetic conditions through advocacy programs, patient networks, education, and community resources. - Visit
Global Genes
Global Genes provides rare disease education, patient toolkits, advocacy training, and support resources for caregivers and individuals navigating diagnosis or treatment. - Visit
National Human Genome Research Institute (NHGRI)
NHGRI offers educational materials on genetics, inherited conditions, research initiatives, and resources to help patients better understand genetic health. - Visit
Undiagnosed Diseases Network (UDN)
A research program funded by the National Institutes of Health that helps patients with complex or undiagnosed genetic conditions connect with specialized evaluation programs. - Visit
Patient Advocate Foundation
Provides case management services, financial aid guidance, insurance navigation, and support programs for individuals facing complex or chronic health conditions, including rare diseases.Call: 800-532-5274 - Visit
National Society of Genetic Counselors (NSGC)
Offers a nationwide directory to help individuals find licensed genetic counselors for education, risk assessment, and inherited condition guidance.