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Get In Touch

Are you or someone you know looking for information about rare diseases? We invite patients, family members, caregivers, and others seeking information about rare diseases to contact GARD by leaving us a detailed voice message or through our contact form. Our Information Specialists provide personalized responses that are easy to understand, free of charge, and confidential.
 

GARD Information Specialists can help find information about: 

  • Rare diseases 
  • Finding specialists 
  • Patient organizations 
  • Organizations that may provide financial, disability, or travel support 
  • Clinical studies
  • International rare disease organizations
  • Support for caregivers
  • Resources for people who suspect they have an undiagnosed rare disease


We also encourage you to look at our Resources section. These resources address common needs of rare disease patients and families, including contact information for rare disease centers outside of the United States. 

Important: GARD provides information about genetic and rare diseases for your general knowledge and is not a substitute for medical advice.

Call Us
Leave a detailed voice message and a GARD information specialist will respond to your inquiry.

Toll Free:

1-888-205-2311
Contact GARD
Use the contact form to send your question to a GARD Information Specialist.

Please allow 2 to 10 business days for us to respond.
Ask a GARD Specialist
Submit Your Organization
Use our request form to suggest additions or updates to patient organizations included on GARD.

Crisis Support

When living with a rare disease, it can be critical to know which resources are available in a crisis. The following organizations can offer assistance directly or can help find other emergency and non-emergency resources. The organizations and resources are listed for information purposes only. Inclusion on this list does not reflect an endorsement by GARD or the NIH.