Rare Diseases Information

Links to a broad range of information about rare diseases including definitions, causes, treatments, and publications about rare diseases. When you enter most of the Web sites listed below, you will leave the ORD Web site. Please return to our Web site to find more information on rare diseases research and research resources, patient support groups, and genetic testing laboratories and clinics.

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Rare Diseases and Related Terms
A searchable list of almost 7,000 rare diseases with links to information from federally supported databases and information sources.

NLM Gateway
Allows users to search across multiple resources offered on the National Library of Medicine's Web site.

PubMed
Access to more than 16 million MEDLINE citations, life science journals, and links to many sites providing full text articles.

Office of Orphan Products Development, FDA
Promotes the development of products that demonstrate promise for the diagnosis and/or treatment of rare diseases or conditions.

Federal Resources for Rare Diseases Information

Health Hotlines
A database of toll-free numbers from the National Library of Medicine (NLM) with descriptions of more than 14,000 biomedical information resources, including organizations, databases, research resources, etc.

The National Institutes of Health (NIH)
Information about the National Institutes of Health, the Nation's Medical Research Agency

Healthfinder.gov
A gateway to consumer health information maintained by the Federal government and its many partners.

USA.gov - Government Made Easy
As the U.S. government's official Web portal, USA.gov makes it easy for the public to get U.S. government information and services on the Web.

Other Resources for Rare Diseases Information

ORPHANET
European database dedicated to information on rare diseases and orphan drugs; it aims to improve management and treatment of genetic, auto-immune or infectious rare diseases, rare cancers, or not yet classified rare diseases.

National Center for Education in Maternal and Child Health (NCEMCH)
Highlights documents and reports in the Maternal and Child Health Library that are related to the history of maternal and child health in the United States and health services for children and families.

The Rare Disease Community
The National Organization for Rare Disorders (NORD) andClinicaHealth provide a free online community service for rare-disease patients, their families, and caregivers.

Family Center on Technology and Disability
The Family Center is a resource designed to support organizations and programs that work with families of children and youth with disabilities.

National Dissemination Center for Children with Disabilities (NICHCY)
Education-focused information about disabilities and disability-related issues to benefit children and youth for families, educators, administrators, and the public.

DDC Clinic for Special Needs Children
A clinic in Northeast Ohio that is a collaboration between the Amish and non-Amish communities to address the needs of all children for treatment, research, and education of rare genetic and metabolic disorders.

Terms and Definitions
Technical terms and definitions from various glossaries.





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