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Connect with groups across Australia and around the world.


Support Group   Website
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
Careing 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) 9926 7324
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://www.geneticandrarediseasenetwork.org.au/
Tel: (08) 9485 8999
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: (02) 9967 5884
RareConnect   http://www.rareconnect.org
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.com.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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