Menu Close

Useful links

International Support Organisations

Genetics Information

Association of Genetic Support Australasia
Located in Sydney, AGSA facilitates support for those affected directly or indirectly by genetic conditions throughout Australasia

Genetic Support Network of Victoria
The GSNV was formed to facilitate a network committed to promoting the interests and well-being of people affected by genetic conditions in Victoria, Australia

The Murdoch Children’s Research Institute
Genetics research organisation in Melbourne, Australia

New South Wales Centre for Genetic Education

Chromosome Deletion Outreach (USA)
Chromosome Deletion Outreach have parent contacts and lists of support organisations for those searching for information on other rare chromosome disorders

The Alliance of Genetic Support Groups(USA)

Genetic / Rare ConditionsSupport Groups & Information
Medical Genetics, University of Kansas Medical Center (USA)

NORD – National Organisation for Rare Disorders(USA)

Support group for rare chromosome disorders (UK)

CVS and Amniocentesis

Links to various Genetics GlossariesUniversity of Kansas (USA) Medical Centre

Online Articles or Information on Cri du Chat Syndrome

Cri du Chat growth charts UK website

Orphanet Journal of Rare Diseases 2006 Description of the syndrome for professionals by one of the Italian researchers, Prof. Cerruti Mainardi

Rare Diseases in Sweden – Cri du Chat Syndrome

FIND – Further Inform Neurogenetic Disorders – University of Birmingham

Research publications of Chris Oliver, Professor of Neurodevelopmental Disorders at University of Birmingham

Health Issues and Medical Resources

Access through PubMed. Look up published medical articles and medical information.

National Institutes of Health (USA)
National Institute of Arthritis and Musculoskeletal and Skin Diseases

Royal Children’s Hospital Melbourne (Australia) Paediatric Handbook Online
Basic information with lots of links. Includes chapters on development and disability

Cleft Lip and Palate Resource (USA)

International Organisation for Functional Gastrointestinal Disorders (USA)

Australian Hearing Services

Saliva Control – (USA)

Vision: What is Strabismus?
Optometrists network. Website about strabismus (turned eye), what it is, how it is treated, how important it is to treat it and when it should be treated,

Speech Pathology Australia

New Visions/Feeding
This site gives some good explanations of problems with feeding, swallowing and speech development. It includes some strategies you can use to help your child.

Better Health Channel
Victorian Government site on health related information (Australia)

Health and Medicine Web Site Directory
Extensive guide to online medical and health information (USA)

Johnson, H. & Scott, A. (1993). A Practical Approach to Saliva Control.
Tucson: Communication Skill Builders.

McCurtin, A. (1997). The Manual of Paediatric Feeding Practice. (Ch.
Saliva Control), pp. 116 – 121.  Oxon, UK: Winslow Press Ltd.

Thomas-Stonell, N. & Greenberg, J. (1988). Three Treatment Approaches and Clinical Factors in the Reduction of Drooling. DYSPHAGIA 3: 73-78.

Augmentative Communication Programs and Devices

Makaton (UK)
Makaton is a sign and symbol system developed for use by adults and children with a varitety of learning disability and communication problems.

Makaton International Sites

Makaton Australia

SPAACE (Supporting People’s AAC Education)
SPAACE is a small business specialising in parent and carer training, coaching and mentoring in Augmentative and Alternative Communication (AAC). Everybody deserves to be heard.

Disability Information Sites and Services

Association for Children with a Disability (Victoria)
The Association for Children with a Disability exists to assist families of children with a disability through the provision of information, support and advocacy. Their site contains very useful information for families in any state (or country for that matter)

The Office of Disability

Information on government financial assistance available to people with disabilities in Australia

Defence Special Needs Support Group
For families in the Australian Defence Forces who have a child with special needs

NZ: Office of Disability Issues NZ

NZ: Living with Disability in New Zealand

NZ: Enable New Zealand

NZ: What Everybody Keeps Asking
Weka is New Zealand’s disability information web site, for people with disabilities, their families, whanau and caregivers, health professionals and disability information providers

United Nations

Declaration on the Rights of Disabled Persons

Achievable Concepts(Australia)
Adapted Recreation and Sporting Equipment for People with Disabilities and the Aged.

Volunteers make custom equipment for people with a disability throughout Victoria (To contact your local state TAD office throughout Australia call 1300 663 243)

Grief, Loss and Sibling Support

Support group for parents who experience miscarriage, stillbirth or newborn death.

A Heartbreaking Choice (USA)
A site for parents who choose to terminate a pregnancy after prenatal diagnosis of an anomaly.

Counseling for Loss and Life Changes (USA)
Site for those experiencing loss.

Association for Children with a Disability (VIC – AUS)
Booklet on sibling support. Order or view online booklet with Adobe Acrobat.

Students – Genetics Resources

Information on CDCS for Students from Elaine Precious (UK)

New South Wales Genetic Education Unit Student Information

Links to various Genetics Glossaries
University of Kansas (USA)  Medical Centre

OMIM – Online Mendelian Inheritance in Man

University of Kansas (USA) Medical Centre
Genetics Education Centre
Excellent resource for anyone but especially for students

Cytogenetics Image Gallery
University of Washington:Pictures and explanations of genetic terms and test procedures(including Fluorescence In-Situ Hybridization – FISH)