Directory of Genetic and Rare Disease Support Groups


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Tarlov Cyst Society of Australia & New Zealand

Supporting: Tarlov Cyst Disease

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Scleroderma Support & Education NZ Trust

Supporting: Scleroderma

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Perthes Kids Foundation Australia & New Zealand

Supporting: Legg-Calvé-Perthes Disease

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Dialysis & Transplant Association of Victoria

Supporting: Kidney Failure

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Joubert Syndrome & Related Disorders Founation

Supporting: Joubert Syndrome

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Crohn’s & Colitis Australia

Supporting: Inflammatory Bowel Disease

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Supporting: Familial Mediterranean Fever

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Chromosome 18 Registry & Research Society (Aust)

Supporting: Chromosome 18 Conditions i.e. 18p- ; 18q- ; Tetrasomy 18p ; Ring 18 ; Trisomy 18 ; and Pitt Hopkins Syndrome

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Batten Disease Support & Research Australia (BDSRA)

Supporting: Batten disease

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PVNH Support & Awareness

Supporting: Band heterotopia

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Trisomy 9 Mosaic UK

Supporting: Trisomy 9 Mosaic

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Intracranial Hypertension New Zealand

Supporting: Idiopathic Intracranial Hypertension

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