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This is a non-exhaustive list of organisations and online portals providing a broad range of information about rare diseases including definitions, causes, treatments, and publications about rare diseases to patients, their families and professionals in the field.

Reference Databases



Orphanet  (the portal of rare diseases and orphan drgus) is a multi-lingual reference portal on rare diseases and orphan drugs, providing information on 6, 000 diseases. It offers a wide range of services, including an encyclopedia of rare diseases, a database of services and an inventory of orphan drugs. For further details visit the Orphanet website; http://www.orpha.net


 Rare Disease Connect


A safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world's leading rare disease patient groups to offer global online communities allowing people to connect around issues which affect them while living with a rare disease.   For further details visit the Rare Disease Connect website: https://www.rareconnect.org/en


United States Resources

National Organization for Rare Disorders (NORD)

NORD, a US not-for-profit organisation, is a unique federation of voluntary rare disease organisations. It is dedicated to helping those affected by rare diseases and assisting organisations that serve them.

Disease InfoSearch

Disease InfoSearch is an online search tool and database of resources for genetic conditions and a repertory of disease-specific advocacy organisations in the Genetic Alliance network.