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The Australian rare disease community is growing, with a leading number of medical and advocacy groups joining together to give those living with a rare disease a voice.

Globally, the movement is even stronger and wider-reaching. 

America's National Organisation for Rare Diseases ("NORD") and the European Organization for Rare Diseases, EURORDIS, host global online communities at  The communities are created in partnership with disease-specific patient organizations.  These communities help patients understand their condition and connect with others.  They also provide tools for living with rare diseases.  A unique feature of this site is that it includes translation into five languages. 

See these useful links to help you connect with others in the community facing the same challenges. 

Australian Paediatric Surveillance Unit, "APSU":

Genetic Alliance Australia (formerly AGSA), "GA Aus":

Rare Voices Australia, "RVA":

Rare Diseases Europe, "Eurordis":

National Organisation for Rare Diseases, "NORD":

ORPHANET, the portal for rare diseases and orphan drugs: