Directory of Genetic and Rare Disease Support Groups

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Tarlov Cyst Society of Australia & New Zealand

Supporting: Tarlov Cyst Disease

Get in touch

Dawn Douglas - President
tarlovcystsocietyaustralia@gmail.com

Scleroderma Support & Education NZ Trust

Supporting: Scleroderma

Get in touch

sclerotrust@gmail.com

Perthes Kids Foundation Australia & New Zealand

Supporting: Legg-Calvé-Perthes Disease

Get in touch

(424) 259-1604
info@pertheskids.org
17 Government House Drive, Emu Plains, Sydney New South Wales 2750, Australia

Dialysis & Transplant Association of Victoria

Supporting: Kidney Failure

Get in touch

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

Joubert Syndrome & Related Disorders Founation

Supporting: Joubert Syndrome

Get in touch

01 707-992-5293
info@jsrdf.org
JSRDF 9 Dorenfeld CT Petaluma, CA 94952

Crohn’s & Colitis Australia

Supporting: Inflammatory Bowel Disease

Get in touch

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

FMF & AID

Supporting: Familial Mediterranean Fever

Get in touch

info@fmfandaid.org

Chromosome 18 Registry & Research Society (Aust)

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

Get in touch

Tracey Healy - President
0407 030 733
admin@chromosome18.org.au
194 Woorarra Avenue, Elanora Heights, NSW, 2101

Batten Disease Support & Research Australia (BDSRA)

Supporting: Batten disease

Get in touch

Julie Ojeda - General enquires
0475 428 691
info@bdsraaustralia.org
9 Norton Avenue, Killarney Vale, NSW, 2291, Australia

PVNH Support & Awareness

Supporting: Band heterotopia

Get in touch

01-604-714-122
info@pvnhsupport.com
PVNH Support & Awareness 206-1082 West 8th Avenue Vancouver British Columbia, V6H 1C4 Canada

Chromosome 18 Registry & Research Society (Aust)

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

Get in touch

Tracey Healy - President
0407 030 733
admin@chromosome18.org.au
194 Woorarra Avenue, Elanora Heights, NSW, 2101

Batten Disease Support & Research Australia (BDSRA)

Supporting: Batten disease

Get in touch

Julie Ojeda - General enquires
0475 428 691
info@bdsraaustralia.org
9 Norton Avenue, Killarney Vale, NSW, 2291, Australia
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