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Useful Support Services

Making the right connections since 1988

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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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