Adrenoleukodystrophy (ALD Life) UK

Alkaptonuria Society UK

Alports Syndrome

American Liver Society

Angelman Syndrome Association

AusEE Inc - a charity dedicated to improving lives affected by eosinophilic disorders

Aussie F.O.L.K.S. The Australian Landau Kleffner Association

Alpha-1 Association Australia

Australian Chapter of the Batten Disease Support & Research Association

Australian Chrohn's and Colitis Association (ACCA)

Australian Cystinosis Support Group

Australasian Genetic Alliance (AGA) Secretariat

Australian Huntington's Disease Association (NSW) Inc.

Australian Kabuki Syndrome Association Incorporated

Australian Leukodystrophy Support Group

Australian Mitochondrial Disease Foundation

Australian Pain Society

Australian Primary Immuno-Deficiency Association

Australian Rare Chromosome Network

Australasian Tuberous Sclerosis Society Inc.

Australasian Wolf Hirschhorn Syndrome.Support Group

Balanced Translocation Support Group

Batten Disease Support & Research Assoc, Australian Chapter

Birth Defect Research for Children

Bowel Group for Kids Inc

Canadian Directory of Genetic Support Groups

Cancer Council NSW Hereditary Cancer Registers

Cardo-facio-cutaneous Syndrome Association

Cardiomyopathy Association of Australia Inc

Centre for Genetics Education - Genetic Services - Support Groups

Chronic Granulomatous Disorder Society

Children's Cardiomyopathy Foundation Inc

Children's Craniofacial Association

Children’s Tumour Foundation of Australia

Crohn's & Colitis Foundation

CMT Association of Australia

Chromosome 18 Registry and Research Society (Aust) Inc.

Chronic Pain Association of Australia


Cochrane Cystic Fibrosis & Genetic Disorders Group

Commonwealth Carelink

Contact a Family

Congenital Adrenal Hyperplasia (CAH) Support Group of Australia

Cornelia de Lange Syndrome Australasia Assocaition

Craniosynostosis Support Group

Creutzfeldt Jacob Disease (fCJD) Support Group

Cri du Chat Syndrome

Cutis Laxa Internationale

Disability Council NSW

Donor Conception Support Group of Aust.

Dore Achievement Centres

European Organisation for Rare Diseases

European Platform for Patient's Organisations, Science and Industry (EPPOSI)

FACES - The National (USA) Craniofacial Association

Forward Face - The Charity for Children with Craniofacial Conditions

Foundation for Angelman Syndrome Therapeutics

The Australian Craniofacial Unit

The Personal Side of Craniofacial Differences

John Hopkins Center for Craniofacial Development & Disorders

FND-CFND - support group for both Frontonasal dysplasia and Craniofrontonasal

dysplasis, at yahoo groups.

Fabry Support Group Australia Inc

Fatty Oxidation Disorders (FOD) Family Support Group

Fragile X Association of Australia Inc.

Australian Galactosaemia Support Network

Genetic Alliance UK

Genetic and Rare Diseases (GARD) Information Centre at the National Institute of Health - USA

Genetics in Family Medicine: The Australian Handbook for General Practitioners

Genetic Support Council of WA

Genetic Support Network Victoria (GSNV)

Genzyme - A Sanofi Company

Haemochromatosis Australia

Hereditary Haemorrhagic Telangiectasia

HSP Research Foundation

Human Genetics Society of Australasia

Hunter Orthopaedic School

Immune Deficiency Foundation of Australia (IDFA)

International Genetic Alliance 

ISMRD - The International Advocate for Glycoprotein Storage Diseases 

Kidney Kids of NZ Support Group Inc

Lymphangioleiomyomatosis Australia

Magic NZ

Many Faces of Moebius Syndrome

March of Dimes

Marfan Support and Information in NSW

Marinesco-Sjogren Syndrome Support Group

Meniere's Support Group of NSW Inc.

Metabolic Dietary Disorders Association

Mitochondrial Disorders

Mowat-Wilson Syndrome

Mucopolysaccharide & Related Diseases Soc. Aust. Ltd.

Muscular Dystrophy Association of NSW Inc.

Myasthenia Gravis Association of NSW

Myasthenia Gravis Association of Queensland

Nail Patella Syndrome Worldwide

National Organization for Rare Disorders, Inc.

National Association for Pseudoxanthoma Elasticum

National SIDS Council of Australia Ltd.

New Zealand Organisation for Rare Disorders (NZORD)

Northcott Disability Services

Ohdo Syndrome Family Network

Osteogenesis Imperfecta Society of Australia (Brittle Bones) Inc


Pallister-Hall Foundation (Aust)

Parent to Parent (New Zealand)

PNH Support Association of Australia Inc

Poland Syndrome Support Association

Polycystic Kidney Disease Association

Polycystic Ovary Syndrome Association of Australia Inc.

Prader-Willi Syndrome Assoc. of Australia

Rare Connect

Rare Disease Day

Rare Disease Day Australia

Rare Diseases South Africa

Rare Diseases UK

Retina Australia NSW

Rett Syndrome Association of NSW Inc

Ring Chromosome 20 Foundation

Rubinstein Taybi Syndrome Australia

Russell Silver Syndrome Network

Russell Silver Syndrome - Australia


Shwachman Diamond Syndrome Australia

Self-Help Organisations United Together (SHOUT)

Short Statured People of Australia

Sjogren Syndrome New Zealand

Smith Magenis Syndrome Support Group of Australia

Sotos Syndrome in Australia

South African Inherited Disorders Association (SAIDA)

Spinal Muscular Atrophy Association of Australia

Stargardt's Australia

Supporting Aussie Kids with Kabuki Syndrome

Syndromes Without A Name (SWAN) Australia

Syndromes Without A Name (SWAN) UK

The Barth Syndrome Foundation, Inc.

The Lupus Association of NSW Inc

Thalassaemia Society of NSW

The Centre for Genetics Education

The Mesothelioma Center

Tourette Syndrome Association of Australia Inc.

Turner Syndrome Association Of Australia Ltd.

Trichothiodystrophy (Tay syndrome)

Trigeminal Neuralgia Association of Australia

Trisomy 18 Support Foundation Inc

Unique UK, Rare Chromosome Disorders Support Group

Velo-Cardio-Facial Syndrome

VSOP (Netherlands)

Western Australian Register of Developmental Anomalies

Williams Syndrome Foundation (UK)

Williams Syndrome Association of South Australia Inc

Williams Syndrome Family Support Group Victoria

Your Genes, Your Health

Upcoming Events

11th International VHL (Von Hippel-Lindau Syndrome) Symposium
Thursday October 23, 8:00 AM - 3:00 PM
5th Annual World Orphan Drug Congress
Wednesday November 12, 8:00 AM - 5:00 PM
International Williams Syndrome Conference, Budapest
Friday November 21, 8:00 AM - 3:00 PM

Contact Us

+61 2 9211 1462

+61 2 9211 8077

66 Albion Street, Surry Hills
NSW 2010 Australia


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