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Group of Australia
Useful Links
Please note that we do not and cannot recommend any programs or products mentioned by families on our website.
Whilst there are a number of valuable programs both new and old, many of the programs and products promoted today on the internet to help children with disabilities are expensive and of limited or no value. They may not have sound scientific research to back them up. Please evaluate and research all products and programs carefully and thoroughly and remember that if the claims they make sound miraculous and too good to be true, they probably are.
There are many unscrupulous and misguided individuals and companies on the internet trying to take advantage of your situation for their own profit or fame. They cleverly promote their products to make you believe they are a miracle product and often use guilt to get you involved. Many are multi level marketing schemes with the promise of profits to you if you get others involved. Beware. Some are just misguided but with good intentions.
Sadly, many parents have believed the claims and promises to such a degree that they promote these programs and products to other families. We don't want to stop you from trying new things, on the contrary, we encourage parents to find and use the best means they can to help their child, but we do urge you all to research thoroughly and be very careful, particularly where it is very costly.
- Cry of the Cat Video
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Video Clip
Sound Clip of the cry -
Diagram of the short
arm of chromosome 5
Meetings in Australia - Cri Du Chat Syndrome Support and Information
- International Support Organisations
UK Cri Du Chat Syndrome Support Group Handbook Online - Genetics
- Online Articles or Information
for Professionals
Information for other genetic disorders including - other disorders of chromosome 5
- Prenatal Genetic Tests
- Health Issues and Medical Resources
- Communication
- Augmentative Communication Programs and Devices
- Speech, Feeding and Oral Motor
Concerns
Disability Information Sites or Services in Australia
Disability Information Sites or Resources International
Mobility/Toys/Switching - Special Equipment Design and Manufacture in Australia
- Government Sites in Australia
- Sibling Support
- New Zealand Links
Grief and Loss - Students - Genetics Resources
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International Support Organisations
The UK handbook online can be found at
http://www.cridchat.u-net.com/booklet/booklet.pdf
This comprehensive booklet covers all aspects of the syndrome in more detail than the information on this site. It requires Adobe Acrobat Reader which you can download by clicking on the logo if you require it.
CRI DU CHAT SYNDROME by A.B.C. ASSOCIAZIONE BAMBINI CRI DU CHAT English - A booklet about the syndrome by the Italian Support Group available in an English translation.
North
American support group
The 5P- Society USA
Ireland
Email
Sound
file of a baby with cri du chat syndrome crying
Polish
Support Group
Email
stowarzyszenie_gen@poczta.onet.pl
Argentinian Support Group
Email mj_rodrigo@yahoo.com
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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
Victorian
Clinical Genetics Services
Genetics services for Victoria and Tasmania (Australia)
South Australian Clinical Genetics Services
New South Wales Centre for Genetic Education (Australia)
New
South Wales Cenre for Genetic Education Fact Sheets
Click on the link at the top of the page for Genetic Fact Sheets.
Online Articles or Information on Cri Du Chat Syndrome
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
Information for those with other Rare Genetic Disorders including other disorders of chromosome 5
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 Conditions
- Support 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
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Health Issues and Medical Resources
Medline - access 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
Heart
Defects
Royal Children's Hospital Melbourne (Australia)
Paediatric Handbook Online
Basic information with lots of links. Includes chapters on development and
disability.
Chapter 10 Behavioural, Developmental and Sleep Problems
Chapter 18 Cardiac Conditions
Chapter 24 Gastrointestinal Conditions
Cleft Palate
Cleft Lip and Palate Resource (USA)
Gastrointestinal Disorders
International Organisation for Functional Gastrointestinal Disorders (USA)
Hearing
Drooling
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.
Oral Aversion
Strategies for treating children with severe oral aversion
Children's Hospital, Richmond, Virginia, 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,
Online Health Directories
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)
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Augmentative Communication Programs and Devices
Compic
Pictorial symbol system used in Australia to aid communication and speech
development in those with disabilities.
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.
List
of State contacts for Makaton in Australia
This includes dates and details for workshops in some states and a contact
person for each state.
Hands Can Talk - Makaton Classes in Sydney (Australia)
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Speech, Feeding and Oral Motor Concerns
Speech Pathology Australia
Fact sheet - What is a speech pathologist?
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.
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TOP
Disability Information Sites or Services in Australia
Human Rights and
Equal Opportunity Commission Disability Unit
The Human Rights and Equal Opportunity Commission deals with complaints of
disability discrimination The site provides valuable information on
disability related issues.
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
New South Wales
IDEAS New South Wales
Information on Disability - Equipment Access Service Inc.
DIRC Disability Information and Resource Centre South Australia
Queensland Disability Information and Access Line (DIAL)
Disability Information Victoria
Aged & Disability Care Information Service Tasmania
VALID is 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)
.
Disability Information Sites or Resources - International
Declaration on the Rights of Disabled Persons
Achievable Concepts
(Australia)
Adapted Recreation and Sporting Equipment for People with Disabilities and
the Aged.
Special Equipment Design and Manufacture in Australia
Technical Aid to the Disabled List of Australian Offices and contact information
TADVIC Technical Aid to the Disabled Victoria TADVIC is an organisation whose volunteer members design, construct or modify equipment for people with disabilities, provided no commercially available product or service will meet their needs.
Regency Park Rehabilitation Engineering (SA)
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Federal and State Government Sites
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
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Exceptional Parent Exceptional Parent magazine's website
Special Child - E-zine for parents and care-givers of children with special needs
.
Association for Children with a Disability (VIC - AUS) Booklet on sibling support. Order or view online booklet with Adobe Acrobat.
.
Office of Disability Issues NZ
Living with Disability in New Zealand
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
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SUPPORTING
A GRIEVING PERSON WHO HAS A DEVELOPMENTAL DISABILITY
Mental Health and Developmental
Disabilities Centre California USA
SANDS (Vic) (AUS) A 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.
What is Cri Du Chat Syndrome? (this site)
Cri Du Chat Syndrome
Information 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.
University of Washington, Seattle, USA
Cytogenetics
Image Gallery
Pictures and explanations of genetic terms and test procedures
(including Fluorescence In-Situ Hybridization - FISH)
Disclaimer
The Cri Du Chat Support Group of Australia Inc. reiterates that all information contained herein is as accurate as possible and given in good faith, however it is not guaranteed. The group does not recommend any product, activity, therapy, treatment, organization or item - such details are given to our members and visitors to our website for their general information and interest only.
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Cri du Chat Support Group of Australia Inc.
Association number A0033602W
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Address: - |
104 Yarralumla Drive, Langwarrin, VIC, Australia 3910 |
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E-mail: - |
Margarette Christie info@criduchat.asn.au |
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Date created:- |
18 March 1999 |
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Date modified:- |
25 May 2009 |
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Created by:- |
Bob Ivison |
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Maintained by:- |
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