Finding Support for Rare Diseases
From About.com
Information about dealing with a rare disease, connecting with others who have rare diseases, finding support groups, and and resources like books and websites.
Listing of Support Groups
Listing of support groups for rare diseases and related issues, with contact information.
- Support Groups for Rare Diseases
- National Organization for Rare Disorders (NORD)
- Contact a Family (CaF) Directory (U.K.)
- NIH Genetic and Rare Diseases Information Center
Books About Rare Diseases
Reviews of books about living with rare diseases, including resource manuals, memoirs, biographies, and related issues. Links provided for comparison shopping.