Have you seen a genetic counsellor yet? They should be able to provide you with a list of organisations/support groups for your condition. In Victoria, there is the Genetic Support Network of Victoria. They have a website www gnsv dot org dot au, and there are a list of support groups there too. The Muscular Dystrophy Association (MDA) might also be a good contact.
I have a rare medical condition, and know how useful it was for me when i found contact with others with similar stories.
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