Dialog Box


Helpful Information

Rare Voices Australia strives to provide up to date information that is both helpful and informative for people living with a rare disease, their familes and carers.  Rare Voices Australia does not receive any direct Government funding to provide professional services to patients living with a rare disease including counselling, help setting up a support group, finding another rare disease support organisation, finding professional support and services in the local jurisdiction.  There are support services available specific to genetic and rare diseases that are funded by State Governments in Victoria, New South Wales and Western Australia.

Genetic and Rare Disease Organisations (state based services)


Genetic Alliance Australia
Address: C/Garvan Institute of Medical Research, 
Level 6, Rm 6.39, 384 Victoria Road, Darlinghurst NSW 2010
Website: http://www.geneticalliance.org.au/
Email: info@geneticalliance.org.au  
Phone: +61 02 9295 8359


Genetic Support Network Victoria (GSNV)
Address: Murdoch Children’s Research Institute, 
Royal Children's Hospital
50 Flemington Road, Parkville, VIC 3052
Phone: +61 03 8341 6315
Email: info@gsnv.org.au
Website: http://www.gsnv.org.au/


Genetic and Rare Disease Network (GaRDN)

Address: PO Box 1023


Phone: 1300 770 995 

Email: hello@gardn.org.au

Webiste: https://gardn.org.au 






Syndromes Without a Name (SWAN Australia)

Address: PO Box 390, Fairfield, Victoria

Phone: 0404 280 441 

Email: info@swanaus.org.au

Website: https://swanaus.org.au













International Rare Disease Organisations

Rare Voices Australia is partnered with international organisations who share the same vision and mission to improve the quality of lives of people with rare disorders.  Through our alliances, Rare Voices Australia stays connected with the latest in global medical and scientific research, diagnoses, treatments and patient services.



A partnership of Eurordis and NORD 



Rare Diseases Europe 



National Organisation for Rare Diseases



New Zealand Organisation for Rare Disorders




Canadian Organisation for Rare Disorders 



Genetic Alliance (US) 


Rare Diseases International