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Neuromuscular Support Group for Young Adults

The GSNV is proudly supporting the Neuromuscular Support Group for Young Adults in its second event on January 28th. The Neuromuscular Support Group for Young Adults is a newly formed informal social group for people in their 20s/30s diagnosed with neuromuscular conditions.

We are pleased to welcome to the event our distinguished guest speaker, Karni Liddell. Karni is a paralympian, NDIS ambassador, member of the UN Women's Board and highly acclaimed speaker.
Please click here to see the attached flyer for more information. RSVP soon as places are limited.

The Australian Rare Diseases Survey of Adults

This is an Australia wide survey on the health care experiences of adults living with a rare disease in Australia. The study is being conducted by the Office of Population Health Genomics, Department of Health WA in partnership with Rare Voices Australia (RVA), Genetic and Rare Disease Network (GARDN), Genetic Support Network Victoria (GSNV) and the Association of Genetic Support Australasia (AGSA). The survey is open until 1 September 2014 and is open to anyone who is;

 *    Aged 18 years or older and living with a rare disease in Australia, or

 *    A carer or paid support worker is permitted to complete the survey if the person aged 18 years or older living with a rare disease does not have the intellectual and/or physical capability to complete the survey

To participate in this study, please click on the link below to the online survey. The survey is anonymous and takes about 20-25 minutes to complete. We ask you to complete the survey by 5pm (AEST) on 1 September 2014.

Australian Rare Diseases Survey Link:

The Ataxian (Newsletter of Ataxia UK) Winter 2008

Written in the Genes







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