Support Groups
Website links open in a new tab.
| A | |
|---|---|
| Aicardi Syndrome | aicardisyndromefoundation.org |
| Alport Syndrome | www.alport.org.au |
| Alström Syndrome | www.alstrom.org.uk www.alstrom.org |
| Apert Syndrome | www.apert.org www.dailystrength.org/c/Apert-Syndrome/support-group |
| Asphyxia | www.developingfoundation.org.au/family/tommy |
| B | |
|---|---|
| Bardet-Biedl Syndrome |
www.bardetbiedl.org |
| Batten Disease | www.battens.org.au |
| C | |
|---|---|
| CHARGE Syndrome | www.chargesyndrome.org/index.asp www.chargesyndrome.org.au |
| Chromosome 18 | www.chromosome18.org |
| Cockayne Syndrome | cockaynesyndrome.org |
| Cogan’s Syndrome | www.vasculitisfoundation.org/education/forms/cogans-syndrome/ |
| Cohen Syndrome | www.cohensyndrome.org |
| Congenital Rubella | Congenital Rubella Syndrome Facebook group |
| Cornelia de Lange Syndrome | corneliadelangesyndrome.org |
| Cri du Chat Syndrome | criduchat.org.au Cri du chat syndrome – Better Health Channel |
| Crouzon Syndrome | www.crouzon.org International Crouzon Syndrome Support Group | Facebook |
| Cytomegalovirus (CMV) | www.cmv.org.au www.nationalcmv.org congenitalcmv.org |
| D – F | |
|---|---|
| Deafblindness (various causes) | DeafBlind Association NSW Deafblind Association of South Australia DeafBlind Victorians Deafblind West Australians |
| Dandy-Walker Syndrome | Dandy-Walker Alliance |
| Down Syndrome |
www.downsyndrome.org.au www.ndss.org |
| Duane Syndrome | www.rarediseases.info.nih.gov/GARD/Disease.aspx/Page?ID=4&diseaseID=6288 |
| Encephalitis | www.encephalitis.info brainfoundation.org.au/disorders/encephalitis |
| Fetal Alcohol Syndrome | www.nofasd.org.au www.fasdhub.org.au |
| G – H | |
|---|---|
| Goldenhar Syndrome | www.goldenhar.org.uk www.goldenharsyndrome.org |
| Hand-Schüller-Christian Disease | www.health.am/encyclopedia/more/hand_schuller_ christian_disease |
| Hunter Syndrome | www.hunterpatients.com huntersyndromefoundation.org projectalive.org/stories/ |
| Hurler Syndrome | rarediseases.info.nih.gov/hurlersyndrome |
| Hydrocephaly/ Hydrocephalus |
www.hydrocephalus.org.au/ |
| I – L | |
|---|---|
| Kearns-Sayre Syndrome |
www.rarediseases.info.nih.gov/GARD/Disease.aspx?PageID=4&diseaseID=6817 |
| Klippel Feil/Wildervanck Syndrome | rarediseases.info.nih.gov/wildervancksyndrome rarediseases.info.nih.gov/klippelfeilsyndrome |
| Klippel-Trenaunay Syndrome | www.k-t.org |
| Kniest dysplasia | www.ksginfo.org |
| Leber’s Congenital Amaurosis | www.visionaustralia.org.au/information/eye-conditions/lebers-congenita |
| Leigh’s Disease | www.childneurologyfoundation.org/disorder/leighs-disease Leigh’s Disease Support and Awareness | Facebook www.umdf.org |
| M | |
|---|---|
| Marfan Syndrome | www.marfan.org www.marfanvic.org.au |
| Marshall Syndrome | marshallsmith.org/en www.rarediseases.info.nih.gov/GARD/Condition/6984/ Marshall_syndrome.aspx |
| Maroteaux-Lamy Syndrome (MPS VI) |
mpssociety.org/learn/diseases/mps-vi/ |
| Meningitis | www.meningitis.com.au/ |
| Microcephaly | marchofdimes.org/microcephaly.aspx microcephaly.co.uk Foundation for Children with Microcephaly – Official Group | Facebook |
| Moebius Syndrome | moebiussyndrome.org |
| Monosomy 10p | www.rarediseases.info.nih.gov/GARD/Condition/1323/ Chromosome_10_monosomy_10p.aspx ; |
| Morquio syndrome (MPS IV-B) |
mpssociety.org/learn/diseases/mps-iv/ |
| N – O | |
|---|---|
| Neonatal Herpes Simplex (HSV) |
www.kittarkafoundation.org/neonatal-herpes-info-and-advice |
| Neurofibromatosis | www.nftnetwork.org www.inspire.com/groups/neurofibromatosis-network/ www.nffamilyfoundation.org |
| Bilateral Acoustic Neurofibromatosis | www.nfnetwork.org www.nf2crew.org NF2 Parent Support – Parents with NF2 Children | Facebook |
| Norrie Disease | www.norriedisease.org www.treatnorriedisease.org |
| Optico-Cochleo-Dentate Degeneration | www.tsbvi.edu/seehear/summer01/early-id.htm |
| P – R | |
|---|---|
| Pallister Killan Mosaic Syndrome |
pks.org.au www.pkskids.net |
| Pfieffer Syndrome | www.bornahero.org/campaigns/what-is-pfeiffer-syndrome/ www.aussiedeafkids.org.au/a-child-with-microtia-and -atresia.html Pfeiffer Syndrome | Facebook |
| Prader-Willi | pwsavic.org.au/get-support praderwilli.org.au |
| Pierre-Robin Syndrome | www.pierrerobin.org.au/ |
| Refsum Syndrome | www.fightingblindness.org/diseases/refsum-disease www.defeatadultrefsumeverywhere.org |
| Rubella | www.healthdirect.gov.au/rubella-german-measles CRS (Congenital Rubella Syndrome) | Facebook |
| S | |
|---|---|
| Scheie Syndrome (MPS I) |
mpssociety.org/support |
| Severe Head/Brain Injury | www.healthinsite.gov.au/topics/Brain_Injuries |
| Smith-Lemli-Opitz (SLO) Syndrome or SLOS | www.smithlemliopitz.org/ |
| Stickler Syndrome | Stickler Syndrome Australia Support Service | healthdirect www.stickler.org.uk www.sticklers.org/sip2 |
| Stroke | strokefoundation.org.au enableme.org.au |
| Sturge-Weber Syndrome – | www.sturge-weber.org |
| T | |
|---|---|
| Congenital Toxoplasmosis | Congenital Toxoplasmosis | Symptoms & Causes | Boston Children’s Hospital (childrenshospital.org) www.inspire.com/groups/food-borne-diseases/ discussion/congenital-toxoplasmosis |
| Treacher Collins Syndrome | www.treachercollins.net |
| Trisomy 13 (Trisomy 13-15, Patausyndrome) | www.trisomy.org raisingchildren.net.au/guides/a-z-health-reference/trisomy-13 |
| Trisomy 18 (Edwards Syndrome) | www.trisomy18.org www.trisomy.org |
| Turner Syndrome | www.turnersyndrome.org.au |
