Contact Us
To find out any more information about how you can be involved, don't hesitate to contact us.
Email: Helen.Leonard@telethonkids.org.au
Phone: +61 419 956 946 | +61 8 6319 1761
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Rett syndrome is a rare but serious neurological disorder that affects about 1 in 9,000 girls. Even more rarely, boys may be affected.
We aim to share our research findings with families so that they may better understand Rett syndrome and the future for their family.
These resources include the best available evidence about the course of Rett syndrome and its management as well as practical information about family associations, specialist clinical centres and links to relevant websites.
Rett Syndrome Association of Australia
The Rett Syndrome Association of Australia provides invaluable support and resources to families of Rett girls in Australia. In April 2007 it hosted a family get-together in Sydney to coincide with Kathy Hunter's visit to Australia. Kathy is the president and founder of the International Rett Syndrome Association. The weekend was a great success.
Mr Bill Callaghan is the founder and president of the Rett Syndrome Association of Australia since 1989. In June 2012 Bill was awarded an Order of Australia medal for for service to community health through founding and leading the Rett Syndrome Association of Australia. For more information click here.
Bill's contact details are:
GPO Box 3497
Melbourne, Victoria 3001
Mobile phone: (03) 0418 561 796
E-mail: rettaust@bigpond.com
A newsletter is also available from the Rett Syndrome Association of Australia.
ANZACRett
ANZACRett is an online discussion group created by a mother with a daughter with Rett syndrome- for all Australian and New Zealand families who also have a child/adult affected by Rett syndrome, their caregiver and friends. It is a forum for discussion on any issues related to Rett syndrome and a place to share experiences and thoughts. Whilst international discussion groups are valuable, some of the information may be less relevant to families "Down Under". Therefore ANZACRett was developed as a place where Australian and New Zealand families can meet online and share local information on resources, equipment, devices or just stay in contact. ANZACRett is a closed group and membership is approved by a moderator to protect families.
For further information please click here.
To find out any more information about how you can be involved, don't hesitate to contact us.
Email: Helen.Leonard@telethonkids.org.au
Phone: +61 419 956 946 | +61 8 6319 1761