Support Groups
| A | |
|---|---|
| Aicardi Syndrome | www.aicardisyndrome.org/site/ www.aicardisupport.org www.awch.org.au/parents-support-group-services.php www.agsa-geneticsupport.org.au/ |
| 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 |
| C | |
|---|---|
| CHARGE Syndrome | www.chargesyndrome.org/index.asp www.chargesyndrome.org.au/support.html |
| Chromosome 18 | www.chromosome18.org |
| Cockayne Syndrome | www.health.msn.com/support-groups/cockayne- syndrome-6 www.cockaynesyndrome.net/main |
| Cogan’s Syndrome | www.coganssyndrome.info |
| Cohen Syndrome | www.cohen-syndrome.org/australia-resources/ www.cohen-syndrome.org/ www.patient.co.uk/support/Cohen-Syndrome-Support-Group.htm www.agsa-geneticsupport.org.au/ |
| Congenital Rubella | www.bpsu.inopsu.com/studies/congenital_ rubella/support.html www.mdjunction.com/rubella |
| Cornelia de Lange Syndrome | www.cdlsaus.org |
| Cri du Chat Syndrome | www.criduchat.asn.au www.betterhealth.vic.gov.au/bhcv2/ bhcarticles.nsf/pages/ Cri_du_chat_syndrome?open |
| Crouzon Syndrome | www.crouzon.org www.youtube.com/watch?v=h5j0yFgQppg |
| Cytomegalovirus (CMV) | www.health.groups.yahoo.com/group/cmv; www.mdjunction.com/cytomegalovirus |
| D – F | |
|---|---|
| Dandy-Walker Syndrome | www.agsa-geneticsupport.org.au/ |
| Down Syndrome |
www.downsyndromesupport.com.au |
| Duane Syndrome | www.mdjunction.com/duane-retraction-syndromewww.experienceproject.com/groups/Have-Duane-Syndrome/97737www.rarediseases.info.nih.gov/GARD/Disease.aspx/Page?ID=4&diseaseID=6288 |
| Encephalitis | www.inspire.com/conditions/encephalitis www.facebook.com/topic.php?uid=233028667842&topic=13790 |
| Fetal Alcohol Syndrome | www.sesiahs.health.nsw.gov.au/young_parents /mothersafe.asp |
| G – H | |
|---|---|
| Goldenhar Syndrome | www.microtiaaustralia.org.au/links/associated-conditions/www.goldenhar.org.uk www.goldenharsyndrome.org |
| Hand-Schüller-Christian Disease | www.health.am/encyclopedia/more/hand_schuller_ christian_disease www.experienceproject.com/search.php?q=Hand-Schuller-Christian+disease |
| Hunter Syndrome | www.hunterpatients.com www.mayoclinic.com/health/hunter-syndrome/DS00790/DSECTION=coping-and-support |
| Hurler Syndrome | www.experienceproject.com/groups/Have-Hurlers- Syndrome/98295 www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002184 |
| Hydrocephaly/ Hydrocephalus |
www.hydrocephalus.org.au/ www.marfanvic.org.au/ |
| I – L | |
|---|---|
| Kearns-Sayre Syndrome |
www.experienceproject.com/groups/Have-Kearns-Sayre-Syndrome/94038 www.rarediseases.info.nih.gov/GARD/Disease.aspx?PageID=4&diseaseID=6817 |
| Klippel Feil/Wildervanck Syndrome | www.agsa-geneticsupport.org.au www.mdjunction.com/forums/klippel-feil-syndrome-discussions/introductions-personal-stories/3389395- 5-year-old-son-with-klippelfeil www.cigna.com/individualandfamilies/health-and-well-being/hw/medical-topics/wildervanck-syndrome-nord 1001.html |
| Klippel-Trenaunay Syndrome | www.k-t.org www.thatslife.com.au/Article/Real-Life/Real-Life-Stories/ Please-dont-stare-at-my-son |
| Kniest dysplasia | www.ksginfo.org/kniest.html |
| Leber’s Congenital Amaurosis | www.visionaustralia.org.au/info.aspx?page=1740 |
| Leigh’s Disease | www.awch.org.au/parents-support-group-services.php |
| M | |
|---|---|
| Marfan Syndrome | www.marfan.net.au/ www.marfanvic.org.au |
| Marshall Syndrome | www.rarediseases.info.nih.gov/GARD/Condition/6984/ Marshall_syndrome.aspx |
| Maroteaux-Lamy Syndrome (MPS VI) |
www.lpamrs.memberclicks.net/index.php?option=com _content&view=article&id=95 www.cigna.com/individualandfamilies/health-and-well-being/ hw/medical-topics/maroteaux-lamy-syndrome-nord283.html |
| Meningitis | www.meningitis.com.au/ |
| Microcephaly | www.microcephalysupport.com/ |
| Moebius Syndrome | www.moebiussyndrome.com/go/support-groups |
| Monosomy 10p | www.rarediseases.info.nih.gov/GARD/Condition/1323/ Chromosome_10_monosomy_10p.aspx ; |
| Morquio syndrome (MPS IV-B) |
www.mpssociety.org.au/MPS%20Diseases/mps_iv.htm www.ncbi.nlm.nih.gov/pubmedhealth/ PMH0002186 |
| N – O | |
|---|---|
| Neonatal Herpes Simplex (HSV) |
www.chw.edu.au/research/groups/apsu.htm |
| Neurofibromatosis | www.nfaa.org.au www.connectgroups.org.au/modules/directory/vieworg. php?id=1557 |
| Bilateral Acoustic Neurofibromatosis | www.users.cobweb.com.au/~ajmurdey/neurofib.html www.nfaa.org.au/PDFs/Info_For_Patients_and _Families.pdf |
| Norrie Disease | www.norriedisease.org www.ghr.nlm.nih.gov/condition/norrie-disease |
| Optico-Cochleo-Dentate Degeneration | www.tsbvi.edu/instructional-resources/110-primary-identified-etiology-deafblind www.tsbvi.edu/seehear/summer01/early-id.htm |
| P – R | |
|---|---|
| Pallister Killan Mosaic Syndrome |
pks.org.au www.pkskids.net www.pkskids.ning.com |
| Pfieffer Syndrome | www.ddms.com.au/medical-conditions/craniofacial-conditions/pfeiffer-syndrome/ www.aussiedeafkids.org.au/a-child-with-microtia-and -atresia.html |
| Prader-Willi | www.pws.org.au/ |
| Pierre-Robin Syndrome | www.pierrerobin.org.au/ www.genetics.edu.au/Genetic-conditions-support-groups/ genetic-support-group-list |
| Refsum Syndrome | www.alds.org.au/about-leukodystrophy/different-types-of-leukodystrophy www.pacifier.com/~mstephe/ |
| Rubella | www.mdjunction.com/rubella |
| S | |
|---|---|
| Scheie Syndrome |
www.mpssociety.org/mps-diseases |
| Severe Head/Brain Injury | www.healthinsite.gov.au/topics/Brain_Injuries |
| Smith-Lemli-Opitz (SLO) Syndrome or SLOS | www.smithlemliopitz.org/ |
| Stickler Syndrome | www.agsa-geneticsupport.org.au www.stickler.org.uk www.sticklers.org/sip2 |
| Stroke | www.strokefoundation.com.au/stroke-support-and-recovery |
| Sturge-Weber Syndrome – | www.agsa-geneticsupport.org.au/ www.sturge-weber.org |
| T | |
|---|---|
| Congenital Toxoplasmosis | www.utmedicalcenter.org/yourhealth/encyclopedia/ disease/001360 www.inspire.com/groups/food-borne-diseases/ discussion/congenital-toxoplasmosis |
| Treacher Collins Syndrome | www.jigsawfoundation.org.au/families/patient-support www.treachercollins.net www.treachercollins.co.uk |
| Trisomy 13 (Trisomy 13-15, Patausyndrome) | www.members.optushome.com.au/karens www.trisomy.org |
| Trisomy 18 (Edwards Syndrome) | www.members.optushome.com.au/karens www.trisomy.org |
| Turner Syndrome | www.turnersyndrome.org.au |
| U – Z | |
|---|---|
| Usher’s Syndrome Type I, II, III | www.agsa-geneticsupport.org.au/ www.senses.asn.au/services/servicesavailable /servavailableusher/ www.mc2.vicnet.net.au/home/usherwa/index.html www.ableaustralia.org.au/ The Coalition for Usher Syndrome Research |
| Vogt-Koyanagi-Harada Syndrome | www.dailystrength.org/groups/vkhsupport/news/view/934780 www.vkhsupport.wordpress.com/2008/02/21/welcome- to-vkh-support |
| Waardenburg Syndrome | www.mdjunction.com/waardenburg-syndrome www.dailystrength.org/c/Waardenburg-Syndrome-WS /support-group |
| Wolf-Hirschholm Syndrome | www.home.vicnet.net.au/~awhssg ; www.4p-supportgroup.org |
