Links to International Support Organisations and Other Useful Sites
International Support Organisations
United Kingdom
(Includes Parent Handbook and link to the Challenging Behaviour DVD)
Italy (Includes CRI DU CHAT SYNDROME by A.B.C. ASSOCIAZIONE BAMBINI CRI DU CHATEnglish translation of booklet about the syndrome)
North America (The 5P- Society, USA)
Belgium
Brazil
Denmark
Germany
Netherlands
Spain
Sweden
Argentinean Email Contact
Irish Email Contact
Polish Email Contact
Cry of the Cat Video Order Details
Other Links
Online Articles or Information on Cri Du Chat Syndrome
Health Issues and Medical Resources
Augmentative Communication Programs and Devices
Disability Information Sites or Services in Australia
Grief, Loss and Sibling Support
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)
UNIQUE Support group for rare chromosome disorders (UK)
Links to various Genetics Glossaries University 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
Health Issues and Medical Resources
MedlineAccess through PubMed. Look up published medical articles and medical information.
Scoliosis National Institutes of Health (USA) National Institute of Arthritis and Musculoskeletal and Skin Diseases
Royal Children’s Hospital Melbourne (Australia) Paediatric Handbook OnlineBasic information with lots of links. Includes chapters on development and disability
Cleft Lip and Palate Resource(USA)
International Organisation for Functional Gastrointestinal Disorders (USA)
Saliva Control - Droolinginfo.org(USA)
Books:
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 Teatment Approaches and Clinical Factors in the Reduction of Drooling. DYSPHAGIA 3: 73-78.
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,
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 ChannelVictorian Government site on health related information (Australia)
Health and Medicine Web Site DirectoryExtensive guide to online medical and health information (USA)
Augmentative Communication Programs and Devices
Makaton(Home Site - UK) Makaton is a sign and symbol system developed for use by adults and children with a varitety of learning disability and communication problems.
Disability Information Sites and Services
Attorney-General's Department, Commonwealth Government
Australasian Legal Information Institute
Anti-Discrimination Board of New South Wales
Anti-Discrimination Commission of Queensland
Equal Opportunity Commission of Victoria
Northern Territory Anti-Discrimination Commission
South Australia Equal Opportunity Commission
Western Australia Equal Opportunity Commission
Department of Family and Community Services Disability Program
ADEC - Action on Disability within Ethnic Communities(Vic)
Disability Information & Communication Exchange(NSW)
IDEAS New South Wales Information on Disability - Equipment Access Service Inc.
DIRC Disability Information and Resource Centre South Australia
Disability Information Victoria
Aged & Disability Care Information Service Tasmania
VALIDis the Victorian Advocacy League for Individuals with Disabilities
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)
Centrelink 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: What Everybody Keeps AskingWeka is New Zealand's disability information web site, for people with disabilities, their families, whanau and caregivers, health professionals and disability information providers
Declaration on the Rights of Disabled Persons
Achievable Concepts(Australia) Adapted Recreation and Sporting Equipment for People with Disabilities and the Aged.
TADVIC 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
SANDS (Vic)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.
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)