Links to Useful Sites

Adrenoleukodystrophy (ALD Life) UK
http://www.aldlife.org

Alkaptonuria Society UK
http://www.alkaptonuria.info

Alports Syndrome
http://www.alportsyndrome.org

American Liver Society
http://www.liversociety.org

Angelman Syndrome Association
http://www.angelmansyndrome.org

AusEE Inc - a charity dedicated to improving lives affected by eosinophilic disorders
http://www.ausee.org

Aussie F.O.L.K.S. The Australian Landau Kleffner Association
http://www.angelfire.com/hi5/aussiefolks/

Alpha-1 Association Australia
http://www.alpha1.org.au

Australian Chapter of the Batten Disease Support & Research Association
http://www.battens.org.au

Australian Chrohn's and Colitis Association (ACCA)
http://www.acca.net.au

Australian Cystinosis Support Group
http://www.cystinosis.com.au

Australasian Genetic Alliance (AGA) Secretariat
http://geneticsupportcouncil.org.au

Australian Huntington's Disease Association (NSW) Inc.
http://www.ahdansw.asn.au

Australian Kabuki Syndrome Association Incorporated
http://www.kabukisyndromeassoc.com.au

Australian Leukodystrophy Support Group
http://www.alds.org.au

Australian Mitochondrial Disease Foundation
http://www.amdf.org.au

Australian Pain Society
http://apsoc.org.au

Australian Primary Immuno-Deficiency Association
http://www.apin.org.au

Australian Rare Chromosome Network
http://arcan.org.au/

Australasian Tuberous Sclerosis Society Inc.
http://www.atss.org.au

Australasian Wolf Hirschhorn Syndrome.Support Group
http://home.vicnet.net.au/~awhssg

Balanced Translocation Support Group
http://health.groups.yahoo.com/group/balanced-translocations/

Birth Defect Research for Children
http://www.birthdefects.org

Bowel Group for Kids Inc
http://www.bgk.org.au

Canadian Directory of Genetic Support Groups
http://www.lhsc.on.ca/programs/medgenet/

Cancer Council NSW Hereditary Cancer Registers
http://www.cancercouncil.com.au/editorial.asp?pageid=663

Cardo-facio-cutaneous Syndrome Association
http://www.cfcsyndrome.org

Cardiomyopathy Association of Australia Inc
http://www.cmaa.org.au

Centre for Genetics Education
http://www.genetics.com.au
http://www.genetics.edu.au/Genetics-Services - Genetic Services
http://www.genetics.edu.au/Genetic-conditions-support-groups - Support Groups

Chronic Granulomatous Disorder Society
http://www.cgdsociety.org

Children's Cardiomyopathy Foundation Inc
http://www.childrenscardiomyopathy.org

Children's Craniofacial Association
http://www.ccakids.com

Crohn's & Colitis Foundation
http://www.healthline.com/health/crohns-disease

CMT Association of Australia
http://www.e-bility.com/cmtaa

Chromosome 18 Registry and Research Society (Aust) Inc.
http://www.chromosome18.org

Chronic Pain Association of Australia
http://www.chronicpainassociation.org.au

CLIMB
http://www.climb.org.uk

Cochrane Cystic Fibrosis & Genetic Disorders Group
http://www.liv.ac.uk/cfgd
http://www.nicsl.com.au/cochrane/index.asp

Commonwealth Carelink
http://www.commcarelink.health.gov.au

Contact a Family
http://www.cafamily.org.uk
http://www.makingcontact.org

Congenital Adrenal Hyperplasia (CAH) Support Group of Australia
http://www.cah.org.au

Cornelia de Lange Syndrome Australasia Assocaition
http://www.cdlsaus.org

Craniosynostosis Support Group
http://www.caps2000.org

Creutzfeldt Jacob Disease (fCJD) Support Group
http://www.cjdsupport.org.au

Cri du Chat Syndrome
http://www.criduchat.asn.au

Cutis Laxa Internationale
http://www.orpha.net/nestasso/cutislax

Disability Council NSW
http://www.disabilitycouncil.nsw.gov.au

Donor Conception Support Group of Aust.
http://www.dcsg.org.au

Dore Achievement Centres
http://www.dore.com.au

European Organisation for Rare Diseases
http://www.eurodis.org

European Platform for Patient's Organisations, Science and Industry (EPPOSI)
http://www.epposi.org

FACES - The National (USA) Craniofacial Association
http://www.faces-cranio.org

Forward Face - The Charity for Children with Craniofacial Conditions
http://www.forwardface.org

Foundation for Angelman Syndrome Therapeutics
http://www.cureangelman.org.au/

The Australian Craniofacial Unit
http://www.wch.sa.gov.au/acfu

The Personal Side of Craniofacial Differences
http://members.tripod.com/~Craniofacial

John Hopkins Center for Craniofacial Development & Disorders
http://www.hopkinsmedicine.org/craniofacial

FND-CFND - support group for both Frontonasal dysplasia and Craniofrontonasal
dysplasis, at yahoo groups.
http://au.groups.yahoo.com/group/FND-CFND

Fabry Support Group Australia Inc
http://www.fabry.com.au

Fatty Oxidation Disorders (FOD) Family Support Group
http://www.fodsupport.org

Fragile X Association of Australia Inc.
http://www.fragilex.org.au

Australian Galactosaemia Support Network
http://www.agsn.org.au/

Genetic Alliance
http://www.geneticalliance.org

Genetic and Rare Diseases (GARD) Information Centre at the National Institute of Health - USA
http://rarediseases.info.nih.gov/html/resources/info_cntr.html

Genetics in Family Medicine: The Australian Handbook for General Practitioners
http://www.gpgenetics.edu.au

Genetic Interest Group
http://www.gig.org.uk/linktogig.htm

Genetic Support Council of WA
http://geneticsupportcouncil.org.au

Genetic Support Network Victoria (GSNV)
http://www.gsnv.org.au

Genzyme Australasia
http://www.genzyme.com.au

Hereditary Haemorrhagic Telangiectasia
http://www.telangiectasia.co.uk

HSP Research Foundation
http://www.hspersunite.org.au

Human Genetics Society of Australasia
http://www.hgsa.com.au

Hunter Orthopaedic School
http://www.hunterorthopaedic.com.au

Immune Deficiency Foundation of Australia (IDFA)
http://www.idfaustralia.org

International Genetic Alliance
http://www.internationalgeneticalliance.org 

ISMRD - The International Advocate for Glycoprotein Storage Diseases
http://www.ismrd.org/ 

Kidney Kids of NZ Support Group Inc
http://www.kidneykids.org.nz

Lymphangioleiomyomatosis Australia
http://www.lam.org.au

Magic NZ
http://www.magicnz.org.nz

Many Faces of Moebius Syndrome
http://www.manyfacesofmoebiussyndrome.com

March of Dimes
http://www.marchofdimes.com

Marfan Support and Information in NSW
http://www.marfan.net.au

Marinesco-Sjogren Syndrome Support Group
http://www.marinesco-sjogren.org

Meniere's Support Group of NSW Inc.
http://www.menieresnsw.org.au

Metabolic Dietary Disorders Association
http://www.mdda-australia.org

Mitochondrial Disorders
http://www.puzzlingsicknesses.info/

Mowat-Wilson Syndrome
http://www.mowatwilson.org

Mucopolysaccharide & Related Diseases Soc. Aust. Ltd.
http://www.mpssociety.org.au

Muscular Dystrophy Association of NSW Inc.
http://www.mdansw.org

Myasthenia Gravis Association of NSW
http://www.myasthenia.org.au

Myasthenia Gravis Association of Queensland
http://www.mg-qld.gil.com.au/associates.php

Nail Patella Syndrome Worldwide
http://www.nailpatella.org

National Organization for Rare Disorders, Inc.
http://www.rarediseases.org

National Association for Pseudoxanthoma Elasticum
http://www.ucaqld.com.au/pxe
http://www.pxe.org

National SIDS Council of Australia Ltd.
http://www.sidsandkids.org

Neurofibromatosis Association of Australia Inc.
http://www.nfaa.org.au

New Zealand Organisation for Rare Disorders (NZORD)
http://www.nzord.org.nz

Northcott Disability Services
http://www.northcott.com.au

Osteogenesis Imperfecta Society of Australia (Brittle Bones) Inc
http://www.oiaustralia.org

Ohdo Syndrome Family Network
http://www.seville44.fsnet.co.uk

Pallister-Hall Foundation (Aust)
http://www.pallisterhall.com

Parent to Parent (New Zealand)
http://www.parent2parent.org.nz

PNH Support Association of Australia Inc
http://www.pnhsaa.org.au

Poland Syndrome Support Association
http://groups.msn.com/Polandsyndromesupportwelcome

Polycystic Kidney Disease Association
http://www.kidney.org.au/renalresources

Polycystic Ovary Syndrome Association of Australia Inc.
http://www.posaa.asn.au

Prader-Willi Syndrome Assoc. of Australia
http://www.pws.org.au

Rare Connect
https://www.rareconnect.org

Rare Disease Day
http://www.rarediseaseday.org

Rare Diseases UK Alliance
http://www.raredisease.org.uk

Retina Australia NSW
http://www.retinaaustralia.com.au

Rett Syndrome Association of NSW Inc
http://www.rett.nesher.com.au

Ring Chromosome 20 Foundation
http://www.ring20.org

Rubinstein Taybi Syndrome Australia
http://www.rubinstein-taybi.org.au/

Russell Silver Syndrome Network
http://www.magicfoundation.org

Russell Silver Syndrome - Australia
http//health.groups.yahoo.com/group/rssaustralia

Shwachman Diamond Syndrome Australia
http://www.shwachmandiamondsyndrome.com.au

Self-Help Organisations United Together (SHOUT)
http://www.shout.org.au

Short Statured People of Australia
http://www.nsw.sspa.asn.au

Sjogren Syndrome New Zealand
http://www.sjogrensnewzealand.co.nz

Smith Magenis Syndrome Support Group of Australia
http://www.smithmagenis.org

South African Inherited Disorders Association (SAIDA)
http://sunsite.wits.ac.za/saida

Spinal Muscular Atrophy Association of Australia
http://smaaustralia.com

Stargardt's Australia
http://www.stargardts-au.org

Supporting Aussie Kids with Kabuki Syndrome
http://www.sakks.org

Syndromes Without A Name (SWAN)
http://members.optusnet.com.au/~swanaus

The Barth Syndrome Foundation, Inc.
http://www.barthsyndrome.org

The Haemochromatosis Society of Australia
http://www.home.gil.com.au/~haemsoc/index.html

The Lupus Association of NSW Inc
http://www.lupusnsw.org.au

Thalassaemia Society of NSW
http://www.tsv.org.au

The Centre for Genetics Education
http://www.genetics.com.au

The Mesothelioma Center
http://www.asbestos.com/

Tourette Syndrome Association of Australia Inc.
http://www.tourette.org.au

Turner Syndrome Association Of Australia Ltd.
http://www.turnersyndrome.org.au

Trichothiodystrophy (Tay syndrome)
http://www.vp-it.com/sammyjoe

Trisomy 18 Support Foundation Inc
http://www.trisomy18support.org

Unique UK, Rare Chromosome Disorders Support Group
http://rarechromo.org

Velo-Cardio-Facial Syndrome
http://www.vcfsfa.org.au

VSOP (Netherlands)
http://www.vsop.nl

Western Australian Register of Developmental Anomalies
http://kemh.health.wa.gov.au/services/register_developmental_anomalies/

Williams Syndrome Foundation (UK)
http://www.williams-syndrome.org.uk

Your Genes, Your Health
http://vector.cshl.org