International Support Organisations
(Includes CRI DU CHAT SYNDROME by A.B.C. ASSOCIAZIONE BAMBINI CRI DU CHAT English translation of booklet about the syndrome)
(The 5P- Society, USA)
Irish Email Contact
Polish Email Contact
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
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
Genetic / Rare ConditionsSupport Groups & Information Medical Genetics, University of Kansas Medical Center (USA)
UNIQUE Support group for rare chromosome disorders (UK)
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
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
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,
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 is a sign and symbol system developed for use by adults and children with a varitety of learning disability and communication problems.
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
IDEAS New South Wales
Information on Disability – Equipment Access Service Inc.
VALID is the Victorian Advocacy League for Individuals with Disabilities
Cerebra is a UK charity supporting children with brain conditions
Autistica is a UK network supporting people with autism and their families
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)
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: 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
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
Links to various Genetics Glossaries
University of Kansas (USA) Medical Centre
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)