- National Organization for Rare Disorders, Inc.
- Information about NORD, its programs, special events and the variety of services offered. Includes a rare disease, organization and orphan drug database. Diseases are listed alphabetically for easy searching.
- A non-profit support group for the families and medical care providers of children and adults born with Congenital Diaphragmatic Hernia.
- Contact a Family
- Information about this organization as well as the CaF directory of specific conditions and rare disorders. Also details about the Rare Disorders Alliance - UK.
- European Organisation for Rare Diseases
- Alliance of patient associations dedicated to improving the quality of life of all people living with rare diseases in Europe.
- Human Growth Foundation
- Information about growth-related disorders through education, research, and advocacy. Member driven organization.
- Office of Rare Diseases
- Information on more than 6000 rare diseases, including current research, publications from scientific and medical journals, completed research, ongoing studies, and patient support groups.