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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: Suite 7, Oasis Lotteries House, 
37 Hampden Road, Nedlands WA 6009
Phone: +61 08 9485 8999
Email:  hello@gardn.org.au
Website: 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.

 

RareConnect

A partnership of Eurordis and NORD 


 

Eurordis

Rare Diseases Europe 

 

NORD

National Organisation for Rare Diseases

 

NZORD

New Zealand Organisation for Rare Disorders

 

 

CORD

Canadian Organisation for Rare Disorders 

 

 

Genetic Alliance (US) 

 
 
 

Rare Diseases International