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 ORDR 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.
PubMed
Access to more than 16 million MEDLINE citations, life science journals, and links to many sites providing full text articles.
ORDR Rare Disease Day
Rare Disease Day was established to raise awareness with the public about rare diseases, the challenges encountered by those affected, the importance of research to develop diagnostics and treatments, and the impact of these diseases on patients' lives.
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.
Talking Glossary of Genetic Terms
The National Human Genome Research Institute (NHGRI) created the Talking Glossary of Genetic Terms to help everyone understand the terms and concepts used in genetic research. In addition to definitions, specialists in the field of genetics share their descriptions of terms, and many terms include images, animation and links to related terms.
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.
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.
Talking Glossary of Genetic Terms
The National Human Genome Research Institute (NHGRI) created the Talking Glossary of Genetic Terms to help everyone understand the terms and concepts used in genetic research. In addition to definitions, specialists in the field of genetics share their descriptions of terms, and many terms include images, animation and links to related terms.
Other Resources for Rare Diseases Information
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.
Family Center on Technology and Disability
The Family Center on Technology and Disability is a resource designed to support organizations and programs that work with families of children and youth with disabilities.
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.
RareConnect
The National Organization for Rare Disorders (NORD) and the European Rare Disease Organisation (EURORDIS) created RareConnect to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources.
Swedish Rare Disease Database
The Swedish National Board of Health and Welfare publishes a database about rare diseases. The information is available in English.