SUPPORT GROUPS—RARE DISEASES
Please note—The information listed here comes from many sources. Please check individual groups for suitability for your family’s needs.
Madison’s Foundation
Online support group for families dealing with rare diseases
The Genetic Alliance
202-966-5557
National Organization for Rare Disorders
203-744-0100
Rare Share
An online community for families dealing with rare disorders. They have online support groups for a long list of rare disorders
Rare Connect
This website is the portal to a global community of people dealing with rare disorders.
Here, you can find information and resources and connect with other families from around the globe dealing with the same issues. There are currently over 70 rare disease communities that can be accessed through this website.