Useful Support Services
Making the right connections since 1988
Connect with groups across Australia and around the world.
In addition to the below list of support services, Genetic Alliance has partnered with Patient Pathways Telehealth Nurse Pilot to assist our clients. This service puts you in direct contact with a health professional that can assist with:
- Navigating the health care system for individuals with a rare or genetic disease
- Answering any questions you may have about a rare or genetic condition
- Discussing everyday challenges of living with a rare or genetic disease
- Finding other support services that may be helpful to you or your family
To book a free, confidential appointment with a telehealth nurse call 1300 75 50 50 or click here
| 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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