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 | |
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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 |