Useful Support Services
Making the right connections since 1988
Connect with groups across Australia and around the world.
| Support Group | Website | |
|---|---|---|
| Able Australia | http://www.ableaustralia.org.au/
Tel: 1300 225 369 | |
| Ageing Disability and Homecare Department | http://www.adhc.nsw.gov.au/
Tel: (02) 8270 2000 | |
| Arabic Genetics Resources | http://www.werathah.com | |
| Association for Children With a Disability | http://acd.org.au/
Tel: 03 9818 2000 | |
| Association for the Wellbeing of Children in Healthcare (AWCH) | www.awch.org.au
Tel: (02) 9817 2439 | |
| Australian Clinical Trials | http://www.australianclinicaltrials.gov.au/ | |
| Australian Genetic Heart Disease Registry | http://www.heartregistry.org.au/
Tel: +61 2 9565 6185 | |
| Australian New Zealand Clinical Trials Registry | http://www.anzctr.org.au/
Tel: + 61 2 9562 5333 | |
| Australian Rare Chromosome Network | http://www.arcan.org.au/ | |
| Australian Thyroid Foundation | https://www.thyroidfoundation.com.au/
Tel: (61 2) 9890 6962 | |
| Autoimmune Resource and Research Centre | http://www.autoimmune.org.au/home/.aspx | |
| Birth Defect Research for Children | http://birthdefects.org/
Tel: 407-895-0802 | |
| Bladder, Exstrophy, Epispadias, Cloacal Exstrophy, Hypospadias Australian Community | www.beechac.org
Tel: 0415 102 984 | |
| Bowel Group for Kids | www.bgk.org.au
Tel: (02) 4659 6067 | |
| Canadian Organization for Rare Disorders | http://www.raredisorders.ca/
Tel: (416) 969-7464 | |
| Cardiomyopathy Association of Australia Ltd | http://www.cmaa.org.au/
Tel: 1300 362 787 | |
| Carers NSW | http://www.carersnsw.org.au/
Tel: 1800 242 636 | |
| Caring for Rare Disease Caregivers | https://www.rarecaregivers.org/ | |
| Center for Rare Disease Therapy | http://www.chp.edu/our-services/rare-disease-therapy
Tel: +1-412-692-RARE or 412-692-7273 | |
| Centre for Developmental Disabilities Studies | http://www.cds.med.usyd.edu.au/
Tel: (02) 8878 0500 | |
| Centre for Genetics Education | www.genetics.edu.au
Tel: 02 9462 9599 | |
| Cerebral Palsy Symptoms | www.cerebralpalsysymptoms.com | |
| Chain Reaction Foundation | http://www.chainreaction.org.au/
Tel: (02) 9953 3287 | |
| CLIMB Children Living with Inherited Metabolic Diseases | www.climb.org.uk
Tel: 0800 652 3181 | |
| Coeliac Autralia | http://www.coeliac.org.au/
Tel: 1300 458 836 | |
| CONTACT A FAMILY, U.K. | www.cafamily.org.uk
Tel: 0808 808 3555 | |
| Cord Blood Guide | https://www.cordbloodguide.com/
Tel: - | |
| Darling Point Special School | https://darlpoinspecs.eq.edu.au/
Tel: (07) 3348 0111 | |
| Disability Council NSW | http://www.disabilitycouncil.nsw.gov.au/ | |
| DNA Learning Centre | https://www.dnalc.org/
Tel: (516) 367-5170 | |
| Donor Conception Support Group | http://www.dcsg.org.au/
Tel: dcsupport@hotmail.com | |
| Early Childhood Intervention Australia | http://www.ecia-nsw.org.au/
Tel: 02 9873 2593 | |
| Early Education (EarlyEd) Inc | http://www.earlyed.com.au/
Tel: 9923 2727 | |
| European Organisation for Rare Diseases (EURORDIS) | http://www.eurordis.org/ | |
| European Platform for Patient’s Organisations, Science and Industry (EPPOSI) | http://www.epposi.org/ | |
| Family Planning NSW | www.fpnsw.org.au
Tel: 02 8752 4300 | |
| Family Resource and Network Support Inc (FRANS) | https://frans.com.au/
Tel: (02) 9799 4333 | |
| Genetic Alliance (USA) | http://www.geneticalliance.org/ | |
| Genetic Alliance UK | http://www.geneticalliance.org.uk/ | |
| Genetic and Rare Disease Network (GaRDN) | http://gardn.org.au
Tel: 1300770995 | |
| Genetic Support Network of Victoria (GSNV) | http://www.gsnv.org.au/
Tel: 03 8341 6315 | |
| Hastings Early Intervention Service, Port Macquarie | http://heip.com.au/
Tel: 02 6583 8238 | |
| Health Direct | http://www.healthdirect.gov.au/
Tel: 1800 022 222 | |
| Human Genetics Society of Australasia | http://www.hgsa.com.au | |
| Indian Organization for Rare Diseases | www.I-ORD.org
Tel: (+1) 651 688 7382 | |
| Information of Disability and Education Awareness Service I.D.E.A.S. Inc | www.ideas.org.au
Tel: 1800 029 904 | |
| International Alliance of Patients' Organizations (IAPO) | https://iapo.org.uk/ | |
| John Hopkins Center for Craniofacial Development & Disorders | http://www.hopkinsmedicine.org/craniofacial | |
| Kidney Kids of NZ Support Group Inc | http://www.kidneykids.org.nz | |
| Kurrajong Early Chilhood Intervention Service | http://www.kurrajongwaratah.org.au/KurrajongEarlyInterventionService.aspx
Tel: (02) 6923 8400 | |
| Making Contact (UK) (part of Contact a Family UK) | https://makingcontact.org/
Tel: (020) 7608 8700 | |
| March of Dimes | http://www.marchofdimes.com | |
| Miscarriage, Stillborn and Newborn Death Support (SANDS) | http://www.sands.org.au/
Tel: (03) 9899 9414 | |
| My Aged Care | http://www.myagedcare.gov.au/
Tel: 1800 200 422 | |
| MyTime Support Groups | http://www.mytime.net.au/
Tel: http://www.mytime.net.au/faq/ | |
| National Council of Intellectual Disability | www.ncid.org.au
Tel: (02) 6296 4400 | |
| National SIDS Council of Australia Ltd. | http://www.sidsandkids.org/
Tel: (+61) 3 8888 1600 | |
| New Zealand Organisation for Rare Disorders | www.nzord.org.nz
Tel: (+64) 4 566 7707 | |
| NORD (National Orgnization for Rare Dieases - USA) | http://rarediseases.org/
Tel: 203-744-0100 | |
| Northcott Disability Services | https://www.northcott.com.au/
Tel: 02 98900100 | |
| NSW Health - Kids and Families | http://www.health.nsw.gov.au/kidsfamilies/pages/default.aspx | |
| Orphanet | http://www.orpha.net/
Tel: (+33) (0)1.56.53.81.37 | |
| Parent to Parent (NZ) | www.parent2parent.org.nz
Tel: (+64) 7-853 8491 | |
| Parent To Parent Gippsland |
Tel: (03) 5135 3131 | |
| Parenteral Nutrition Downunder | http://www.parenteralnutritiondownunder.com/ | |
| Patient Innovation | https://patient-innovation.com/ | |
| Prenatal Diagnosis Support Australia | http://www.pdsaustralia.org/ | |
| Raising Children Network | http://raisingchildren.net.au/
Tel: http://raisingchildren.net.au/contact.aspx | |
| Rare Disease Day (International) | http://www.rarediseaseday.org/ | |
| Rare Disease Day Australia | http://www.rarediseasedayaustralia.com.au/ | |
| Rare Disease UK | http://www.raredisease.org.uk/
Tel: 020 7704 3141 | |
| Rare Diseases South Africa | http://www.rarediseases.co.za/ | |
| Rare Diseases Sweden | http://www.sallsyntadiagnoser.se/in-english/
Tel: info@sallsyntadiagnoser.se | |
| Rare Voices Australia (RVA) | http://www.rarevoices.org.au/
Tel: 0497 003 104 | |
| RareConnect | http://www.rareconnect.org | |
| Relationships & Private Stuff | http://www.relationshipsandprivatestuff.com/disability/
Tel: Liz Dore - 0416 122 634 | |
| Ronald McDonald Family Retreat - Forster |
Tel: 02 4921 4733 | |
| Ronald McDonald Family Retreat Ocean Grove – Kessia’s Cottage |
Tel: 03 9562 6223 | |
| Ronald McDonald Family Retreat – Bateman’s Bay – Fiona Lodge |
Tel: Bookings: 1300 135 848 | |
| Ronald McDonald Family Retreat – Bunbury |
Tel: 08 9346 9000 | |
| Ronald McDonald Family Retreat – Palm Cove |
Tel: Bookings: 07 4775 5600 | |
| Ronald McDonald Family Retreat –Jurien Bay |
Tel: 08 9346 9000 | |
| Ronald McDonald House Charities | http://www.rmhc.org.au/ | |
| Sanofi Genzyme | http://www.genzyme.com/ | |
| Scope Victoria | http://www.scopevic.org.au/
Tel: 1300 472 673 | |
| Self-Help Organisations United Together (SHOUT) | http://www.shout.org.au/
Tel: 02 6290 1984 | |
| Syndromes Without A Name (SWAN) Australia | http://www.swanaus.org.au/
Tel: 0404 280 441 | |
| Syndromes Without A Name (SWAN) UK | http://www.undiagnosed.org.uk | |
| The Australian Pain Society | http://apsoc.org.au/
Tel: 61 (2) 9016 4343 | |
| The Cord Blood Centre | http://www.cordbloodbanking.com/
Tel: info@cordbloodbanking.com | |
| The South African Inherited Disorders Association | http://www.saida.org.za/
Tel: 083 399 4353 | |
| Transition to School Resource | http://www.transitiontoschoolresource.org.au/ | |
| Undiagnosed Diseases Network | http://undiagnosed.hms.harvard.edu/ | |
| Unique in Australia (a sub group of Unique UK) | www.rarechromo.org
Tel: (03) 9444 8062 | |
| Unique the Rare Chromosome Disorder Support Group | http://www.rarechromo.org/
Tel: (+44)(0)1883 723356 | |
| Variety - the Children's Charity | http://www.variety.org.au/
Tel: 02 9819 1000 | |
| Vision Australia | www.visionaustralia.org
Tel: 1300 84 74 66 | |
| Western Australian Register of Developmental Anomalies | http://kemh.health.wa.gov.au/services/register_developmental_anomalies/ |
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