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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Dawn Douglas - President

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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(424) 259-1604
17 Government House Drive, Emu Plains, Sydney New South Wales 2750, Australia

Dialysis & Transplant Association of Victoria

Supporting: Kidney Failure

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Sue Hatzimichalis - President
(03) 9894 0377
Office 5, Level 1, 79 Mahoneys Rd, Forest Hill Vic 3131

Joubert Syndrome & Related Disorders Founation

Supporting: Joubert Syndrome

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01 707-992-5293
JSRDF 9 Dorenfeld CT Petaluma, CA 94952

Crohn’s & Colitis Australia

Supporting: Inflammatory Bowel Disease

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Leanne Raven - CEO
(03) 9815 1266
Please send all mail to mailing address: PO Box 777 Camberwell South, Vic 3124 (Physical address: 363 Camberwell Road, Camberwell Vic, 3124)


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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Tracey Healy - President
0407 030 733
194 Woorarra Avenue, Elanora Heights, NSW, 2101

Batten Disease Support & Research Australia (BDSRA)

Supporting: Batten disease

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Julie Ojeda - General enquires
0475 428 691
9 Norton Avenue, Killarney Vale, NSW, 2291, Australia

PVNH Support & Awareness

Supporting: Band heterotopia

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PVNH Support & Awareness 206-1082 West 8th Avenue Vancouver British Columbia, V6H 1C4 Canada

Australian X and Y Spectrum Support (AXYS)

Supporting: XYY

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0412 038 142

XLH Australia

Supporting: X-linked hypophosphatemia

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