Genetic Support Network Victoria (GSNV)Support Groups

Support Groups

106 groups found.

Support Group / Individual	Address	Contact
4P Aussie Kidz - Helping children with Wolf Hirschhorn Syndrome		Melissa Young T 03 8502 7745 4paussiekidz@gmail.com
Albinism Fellowship of Australia		T 1300 221 619 membership@albinismaustralia.org.au
Alzheimer's Australia Victoria		T 03 9815 7800 alz@alzvic.asn.au
Androgen Insensitivity Syndrome (AIS) Support Group Australia		aissgaustralia@gmail.com
Asperger Syndrome Association (ASSN) Victoria Inc.	The Nerve Centre 54 Railway Rd Blackburn	T 03 9845 2766 help@assnvic.org.au
Asthma Foundation Victoria	491-495 King Street MELBOURNE 3003	T 1800 645 130
Atypical Haemolytic Uraemic Syndrome Patient Support Group		Liz Marshall info@apsga.org.au
Australia Alopecia Areata Foundation Inc.	PO Box 5029 Frankston South 3199	Chel Campbell info@aaaf.org.au
Australian Crohn's and Colitis Association (ACCA)		T Freecall 1800 138 029 info@crohnsandcolitis.org.au
Australian Cystinosis Support Group		T 0895312135; 0407196685 cystinosis.australia@bigpond.com
Australian Galactosaemia Support Network		agsn@agsn.org.au
Australian Gorlin Syndrome Mutual Support Group		Anna Hickey annahickey43@gmail.com
Australian Leukodystrophy Support Group Inc		T Freecall 1800 141 400 mail@alds.org.au
Australian Mitochondrial Disease Foundation		T 1300 977 180 info@amdf.org.au
Australian Pompe's Association		T 03 5975 9114 brelmar@surf.net.au
Australian Rare Chromosome Awareness Network		Patricia Jonas T 0402669075 Pjonas@arcan.org.au
Australian Spasmodic Torticollis Association		Jan T 03 9723 6651 astavic@optusnet.vic.au
Autism Victoria - Amaze		T 03 9657 1600 or 03 9657 1619 (Family Counsellor) or 1300 308 699 info@amaze.org.au
Bailee Ada Foundation		Melissa Choate T 0414 846 603 melissa@baf.org.au
Ballarat Lymphoedema Exercise & Education Support Group	Eastwood Leisure Complex Ballarat 3350	Kay Timmins T 0417 155 511
Bardet-Biedel Australia		Kathryn info@bardetbiedlaustralia.org
CAH Support Group of Australia Inc.		president@cah.org.au
Cardiomyopathy Assocation of Australia Ltd		info@cmaa.org.au
Carriers of Balanced Translocations
CDH Australia		Danielle Kessner T 0400 845 681 information@cdh.org.au
Charcot-Marie Tooth Association of Australia Inc.		Bob Hayes T 0419 582 175
CHARGE Syndrome Association of Australasia Ltd.		T 02 9605 8475 ken.charge@hotmail.com
Chromosome 18 Registry & Research Society (Aust), The		T 02 9580 5707 chromosome18@optusnet.com.au
Cleft Palate and Lip Society (CleftPals)		Evelyn Culnane T Support Hotline 0425 784 130; Feeding Equipment Hotline 0425 784 136
Coeliac Society of Victoria		T 03 9808 5566 VicTas@coeliac.org.au
Creutzfeldt-Jakob Disease Support Network Group		T 1800 052 466 contactus@cjdsupport.org.au
Cri Du Chat Support Group of Australia		T 03 9775 9962 info@criduchat.asn.au
Cystic Fibrosis Victoria Inc.		T 03 9686 1811 mlay@cfv.org.au
Down Syndrome Association of Victoria		T Freecall 1300 658 873 or 03 9486 9600 info@dsav.asn.au
Dystrophic Epidermolysis Bullosa Research Association of Australia (DEBRAA)		Victorian Representative Simone Baird T 03 9759 7727 simonebaird@bigpond.com
Ehlers Danlos Syndrome Group Austraila		Bianca Nicholls T 0417 982 959
Epilepsy Foundation of Victoria Inc.		Librarian T 03 9805 9114 pbrockett@epilepsy.asn.au
Fabry Support Group Australia Inc.		Megan Fookes T 0422 201 013 president@fabry.com.au
Fibrodysplasia Ossificans Progressiva Association		Julie Collins T 0417714259 julie.collins1@optusnet.com.au
Foundation for Angelman Syndrome Therapeutics (FAST)		T 1300 078 108 info@cureangelman.org.au
Fragile X Alliance Inc.		T 03 9528 1910 reception@travelclinic.com.au
Fragile X Association of Victoria		T 1300 394 636 (or 0409 987 012 out of Bus. hours) support@fragilex.org.au
Friedreich Ataxia Association of Victoria		Jason Coffey T 0438 464 412 faavic@gmail.com
Friends of Sammy Joe Foundation (Trichothiodystrophy)		Maria T 0407 558 151
Galactosaemia		Eileen Bywater T 03 9702 8986 eand2t@hotmail.com
Gastrostomy Information and Support Society (GISS)		giss.crc@scopevic.org.au
Gaucher Association of Australia	PO Box 983 Sunbury 3429	T 03 9740 7203 gaucher.australia@gmail.com
Glaucoma Australia	PO Box 420 Crows Nest NSW 1585	T (02) 9906 6640 glaucoma@glaucoma.org.au
Goulburn Valley Support Group for Children with Special Needs	PO Box 794 Shepparton 3632	Nicole O'Brien T (03) 5831 7157 information@gvsgcsn.com.au
Haemophilia Foundation Victoria Inc.		T 03 9555 7595 info@hfv.org.au
Heartkids Victoria Inc	PO Box 803 Parkville 3052	T 03 9329 0446 (Head Office) or 0478 091 773 (Tracey Stanley, Support Coordinator) heartkids@heartkids.org.au
Hereditary Spastic Paraplegia		T 03 9467 3891 johnandtia@hotmail.com
Hills Autism & Special Needs Support Group		Barb Brown brum-bs-4ever@live.com
Huntington's Victoria		Tammy Gardner T 03 9818 6333 info@huntingtonsvic.org.au; t.garner@huntingtonsvic.org.au
iCare Special Needs Support Group	PO BOX 3727 Caroline Springs VIC 3023	Mrs Angie Scicluna T 0401 519 365 scicluna7@bigpond.com
Immune Deficiencies Foundation Australia (IDFA)	PO Box 969 Penrith 2751	T 1800 100 198 christine.jeffery@idfaustralia.org; cornflake042@gmail.com (VIC)
Juvenile Diabetes Research Foundation (JDRF)		T 03 9696 3866 info@jdrf.org.au
Kawasaki Disease Foundation	PO Box 585 Brentford Square 3131	info@kdfoundation.org.au
Klinefelter's Support Group of Victoria	PO Box 652 Templestowe 3106	Kieran Sutton-Ryan T 0419 556 825 kieran512@rocketmail.com
Leadership Plus		admin@leadershipplus.com
Limb Kids Support Association Inc.		secretary@limbkids.asn.au; president@limbkids.asn.au
Marfan Association Victoria Inc.		T 1300 691 164 info@marfanvic.org.au
Meniere's Australia Inc		T 03 9783 9233 info@menieres.org.au
Metabolic and Dietary Disorders Association (MDDA)		T 03 9723 0600
Moreland Fibromyalgia Support Group		Penelope Myers T 0422 616 344
Motor Neurone Disease Association of Victoria Inc.	265 Canterbury Rd CANTERBURY VIC 3126 PO Box 23 CANTERBURY VIC 3126	T (03) 9830 2122; 1800 806 632 info@mnd.asn.au
Mucopolysaccharide and Related Diseases Society Australia Ltd.	PO Box 623 Hornsby 1630	David Oliver T (02) 9476 8411 info@mpssociety.org.au
Muscular Dystrophy Australia		Maria Kouppas Client Services Manager T 03 9320 9555 info@mda.org.au
Narcolepsy and Overwhelming Daytime Sleep Society of Australia Co. Ltd (NODSS)		T 9761 9767 info@nodss.org.au
Nevus Support Australia		michelle@nevussupport.com
NF Australia	Suite 2, Level 1 84 Victoria Road DRUMMOYNE NSW 2047	Ms Dorothy Zammit T 02 9719 3356 info@nfaa.org.au
Occulodentodigital Syndrome Support Group		Debra Coutts T 0413 656 758 or 03 9778 3735 stretch73@bigpond.com
Osteogenesis Imperfecta (Brittle Bone) Society of Australia		Victorian Representative Maria Wallace T 0438 981 333 tm.wallace@optusnet.com.au
ozED - Australian Ectodermal Dysplasia Support Group		Jenny Boss T 07 3863 4873 info@ozed.org.au
PCD Australia	PO BOX 581 Altona 3018	Catherine Kruljac catherinekruljac@hotmail.com
Pierre Robin Australia		T 03 9789 9373 info@pierrerobin.org.au
PNH Support Association of Victoria Inc.	PO Box 472 South Yarra 3141	info@pnhsaa.org.au
Porphyria Association		Sean Hegarty T (03) 9845 2737 Porphyria@msaustralia.org.au
Prader Willi Syndrome Association of Victoria
Psoriasis Australia Inc.		Helen Bastian T 03 9813 8080 info@psoriasisaustralia.org.au
Retina Australia Victoria	4th Floor, Ross House 247-251 Flinders lane Melbourne 3000	Leighton Boyd T 03 9650 5088 support@retinavic.org.au
Rett Syndrome Association of Australia		Bill Callaghan rettaust@bigpond.com
RF World Support		coopergt@iprimus.com.au
Rubinstein Taybi Syndrome		info@rubinstein-taybi.org.au
Scleroderma Foundation of Vic Inc.	St Vincents Hospital 41 Victoria Parade Fitzroy 3065	Belinda Kovtlang T 03 9288 3651 (Office hours Tuesdays 10am-3pm) enq@sclerodermavictoria.com.au
Short Statured People of Australia (SSPA) Victoria		Sam Millard (Chairperson) Meredith Young (Secretary) samuel.r.millard@gmail.com young.meredith.e@gmail.com
Shwachman-Diamond Syndrome Australia Inc		Joan Buchanan bachanan.joan@gmail.com
SPELD Vic. Inc.		admin@speldvic.org.au
Spina Bifida Foundation Victoria		T (03) 9663 0075 info@sbfv.org.au
Spinal Muscular Atrophy Association Australia		T 03 9545 3633 smaaa@smaaustralia.org.au
Spinocerebellar Ataxia Australia Inc		Marie Dunn T 0428 589 717
Stickler's Syndrome Down Under
Stiff Person Syndrome Australia		Tanya Jarvis T 0401 450 125 stevtan@tpg.com.au
Support After Fetal Diagnosis of Abnormality
Syndromes Without A Name (SWAN) Australia		Heather Renton T 0404 280 441 admin@swanaus.com.au
Thalassaemia Australia Inc	333 Waverley Road MOUNT WAVERLEY VIC 3149 333 Waverley Road MOUNT WAVERLEY VIC 3149	Ms Maria Kastoras T 9888 2211 F 9888 2150 info@thalassaemia.org.au
The Aussie Hands Foundation Inc.	PO Box 8 Coburg 3058	Elizabeth Serpell T 03 9354 0324 info@aussiehands.org
The Australian Arthrogryposis Group (TAAG) Inc.
The Australian Tuberous Sclerosis Society		Narelle Kerr T (03) 5593 1287 relsy75@hotmail.com
The Friends of Sammy-Jo Foundation		Maria Liistro
Tourette Syndrome Association of Victoria		T 9845 2700 Tourette.Syndrome@msaustralia.org.au
Unique - The Rare Chromosome Disorder Support Group	PO Box 2189 Caterham Surrey CR3 5GN England	T +44 (0)1883 330766 F +44 (0)1883 330766 info@rarechromo.org
VCFS 22q11 Foundation Inc.		Maria Kamper T 02 6337 9433 president@vcfsfa.org.au
Victorian Turners Syndrome Association		Anne-Marie George T 03 9398 1172 Age19045@bigpond.net.au
William's Syndrome Family Support Group		ws.vic.aus@gmail.com
Wolf-Hirschhorn Syndrome Support Group, Australian		Olivia Sheen T 0402608488 onesmallchicken@yahoo.com.au

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