support groups

Support groups sites

• Genetic Support Network of Victoria

Selected Support Group Websites

The information listed below is provided for informational purposes only. Genetic Health does not promote or endorse participation in any specific organisation. Every effort is made to ensure that the details for each entry are as current as possible. Any information you find should be reviewed with your health care provider for accuracy.

• Aarskog Syndrome Parents Support Group
• Aicardi
• Alagille Syndrome Alliance
• Alport Syndrome
• Alstrom syndrome: International Alstroms Syndrome Newsletter
• Alzheimer Disease
• American Cleft Palate-Craniofacial Association (ACPA)
• Androgen Insensitivity Syndrome Support Group (AIS)
• Angelman Syndrome Foundation, Inc
• Angelman Syndrome Support Group
• Alkaptonuria and Ochronosis Notebook
• Ataxia-Telangiectasia Children's Project
• Aussie Hands
• Australian Crohn's and Colitis Association
• Australian Ectodermal Dysplasia Support Group
• Bardert-Biedl, Laurence-Moon
• Batten Disease Support & Research Association
• Beckwith-Wiedemann Support Network
• Blepharophimosis,Ptosis,Epicanthus Inversus Family Network
• Blue Rubbler Bleb Nevus Syndrome Suppport Group
• CAH Support Group Australia
• Cancer Information and Support Service
• CardioFacioCutaneous Syndrome Foundation
• CDG Syndrome Society
• Charcot-Marie-Tooth Association
• Charcot-Marie-Tooth Association Australia (CMTAA)
• CHARGE Syndrome Foundation
• Cherubs Australia
• Chromosome 8 Home Page (Wells Labs)
• Chromosome 9p- Network
• Chromosome 11q: European Chromosome 11Q Network
• Chromosome 18 Home Page
• Chromosome 22 Central
• CleftPALS Victoria
• Coffin-Lowry Syndrome Foundation
• Coffin-Siris Syndrome Support Group
• Congenital Adrenal Hyperplasia
• Congenital Diaphragmatic Hernia
• Cornelia de Lange Syndrome Australasia Association (CdLs)
• Cri-du-Chat Syndrome Support Group
• Crouzon's Support Network
• Cystic Fibrosis Victoria (CF)
• Diabetes Australia - Victoria
• DiGeorge&Shprintzen Syndrome Families
• Down Syndrome
• Down Syndrome Association Victoria (DSAV)
• Dubowitz Syndrome Information and Parent Support
• Duchenne & Becker Muscular Dystrophy - Parent Project Aust
• Dystrophic Epidermolysis Bullosa Research Association (DEBRA)
• Ehlers-Danlos Support Group (US)
• Ehlers-Danlos Foundation of New Zealand
• Epilepsy Foundation of Victoria Inc
• dysplasias: National Foundation for Ectodermal Dysplasia
• Fabry's Support Group Inc
• Facial Paralysis/Moebius Syndrome
• Facio-Scapulo-Humeral Society, Inc
• FG Syndrome Family Alliance
• Fibrodysplasia Ossificans Progressiva: International
• Fibrodysplasia Ossificans Progressiva Association
• Foetal Alcohol Syndrome: National Organization on Fetal Alcohol Syndrome
• Fragile X Alliance Inc.
• Fragile X Association of Victoria
• Fragile X: National Fragile X Foundation
• Fragile X: FRAXA research Foundation, Inc
• Freeman-Sheldon Parent Support Group
• Galactosaemia: Parents of Galactosemic Children, Inc
• Gastronomy Information and Support Society (GISS)
• Gaucher: Gauchers Association
• Gaucher: Gauchers Association of Australia
• Gaucher: Gaucher Disease Treatment Program
• Goldenhar Syndrome research and Information Fund
• Greenberg Centre for Skeletal Dysplasias
• Haemochromatosis
• Haemophilia Foundation Australia
• Haemophilia Foundation Victoria Inc
• Hermansky-Pudlak Syndrome Network
• Holoprosencephaly
• Huntington Disease
• Immune Deficiencies Foundation of Australia (IDFA)
• Incontinentia Pigmenti :National Incontinentia Pigmenti Foundation
• International Skeletal Dysplasia Registry
• Jeune's Family Support Group
• Jeune Syndrome
• Joubert Syndrome Foundation Corp
• Kabuki Syndrome
• Kabuki Syndrome Network
• Klippel-Feil syndrome: KFS Connection
• Klinefelter Syndrome Association, Inc
• Klinefelter Syndrome Support Group Australia
• Kniest Syndrome Info Centre
• Langer-Giedion Syndrome Association
• Laurence Moon Bardet Biedl Syndrome Network
• Leukodystrophy
• Lissencephaly Network, Inc
• Long QT Syndrome
• Lowe Syndrome Association, Inc
• Lymphoedema Association of Victoria Inc
• MAGIC Foundation for Children's Growth
• Mannosidosis: International Society for Mannosidosis & Related Disorders
• MaRoyal Children's Hospital of Dimes Birth Defects Foundation
• Marden Walker: National Marden Walker Syndrome Association
• Marfan Association Victoria Inc
• Marfan Syndrome: National Marfan Foundation
• Marinesco-Sjogren Syndrome Support Website
• Meniere's Support Group of Victoria Inc (MSGV)
• Metabolic Dietary Disorders Association (MDDA)
• Mitochondrial disorders: United Mitochondrial Disease Foundation
• Moebius Syndrome Foundation
• Motor Neurone Disease Association of Victoria Inc (MND)
• MPS: National MPS Society
• Mucopolysaccharide & Related Diseases Society Australia (MPS)
• Muscular Dystrophy Association (MDA)
• Myotublar Myopathy Resource Group
• Nager syndrome: Foundation for Nager and Miller Syndromes
• Nail Patella Syndrome Web Site
• Neurofibromatosis: National Neurofibromatosis Foundation
• Neurofibromatosis: Neurofibromatosis Inc
• Niemann-Pick: National Niemann-Pick Disease Foundation, Inc
• NIDKIDS Support Group Ltd
• Noonan Syndrome: Noonan Syndrome Support Group
• Norrie Disease Association
• Ollier/Mafucci
• Opitz G/BBB Family Network
• Opitz Trigonocephaly Syndrome Family Network (OTSFN)
• Osteogenesis Imperfecta (OI) Foundation
• Phenylketonuria: National PKU News
• Pierre Robin Nework
• Porphyria Association
• Prader-Willi: International Prader Willi Syndrome Association
• Prader-Willi: Prader-Willi Syndrome Association
• Prader-Willi: Prader-Willi Syndrome Association of Victoria Inc
• The Proteus Foundation
• Prune Belly Syndrome Network
• Pseudoxanthoma Elasticism International
• Psoriasis Association of Victoria Inc
• Rare Genetic Diseases in Children
• Retina Australia (Vic) Inc
• Rett syndrome: International Rett Syndrome Association
• Rett syndrome: Rett Syndrome Association UK
• Rett syndrome: Rett Syndrome Association of Australia
• Rieger Syndrome Rare Links
• Rubinstein-Taybi
• Russell-Silver: Association for Children with Russell-Silver Syndrome
• Septo-Optic-Dysplasia Support Group
• Short Statured People of Australia (SSPA)
• Shwachman Syndrome Support International
• Shwachman-Diamond Friends
• Shwachman-Diamond Syndrome - Australia Inc
• Smith-Lemli-Optiz Syndrome Advocacy and Exchange
• Smith Magenis Syndrome Australia (SMS)
• Sotos Syndrome Support Association
• Spina Bifida Association of America
• Spina Bifida Resource Page
• Association for Spina Bifida and Hydrocephalus
• Stickler Syndrome Support Group
• Sturge-Weber Foundation
• Supporting Aussie Kids with Kabuki Sydnrome
• Syndromes Without A Name (SWAN)
• Tay-Sachs: National Tay-Sachs and Allied Diseases Association
• Thalassaemia Society of Victoria Inc
• Trichothiodystrophy Support Network
• Trisomy 18, 13 and related disorders: S.O.F.T
• Trisomy 9 International Parents Support Group
• Treacher-Collins Foundation
• Tuberous Sclerosis Alliance
• Turner Syndrome
• Turner Syndrome Support Group - Albury/Wodonga Region
• Turner's Syndrome Society of the United States
• Unique in Australia
• VATER Association
• VATER Connection
• VCF Information Page
• Velo-Cardio-Facial Syndrome Educational Foundation
• Victoria Turner Syndrome Association
• Von Hippel-Lindau Syndrome : VHL Family Alliance and VHL Syndrome
• Williams Syndrome Association
• Williams Syndrome Family Support Group (VIC) Inc
• Williams Syndrome Foundation
• Wolf-Hirshhorn Syndrome
• WAGR/Aniridia Network
• XLH Network
• XXWhy: The Australian Support Group for Klinefelter Syndrome