Rett Syndrome Support

Rett Syndrome Support


Hi there,

Please note that I will be adding to this page whenever I get new information relating to Rett Syndrome Support.  So please check back regularly.

I am delighted to be able to tell you, that we now have an infant support group on the rise in the Cape Town area.  A small group of Moms have got together  and meet once a month to chat and swop notes.  This same group is also taking baby steps towards raising funds  towards Rett Syndrome Research. 

If you are living in the Cape Town area, and would like to join in – please, please let us know.  You can contact me (Sandy) or Kim by sending us a message via the contact form below.  or you can send an email to

In addition to the above, a Skype group has just been created for parents and family members who would like to chat live about Rett Syndrome.  It does not matter where you live.  Medical Practitioners with specialized knowledge are also welcome to join it.  At this stage, there is no charge to join the group, but fair warning, once the chat group starts getting too big, we will have to switch to a paid function.

To join the group, please Skype me or Kim.  My Skype name is medifox and I am located in Cape Town.  Kim’s Skype name is kim steenkamp also currently located in Cape Town.  Do mention that you want to join the Rett Syndrome group please, as I belong to several groups and would hate to add you to the wrong one.

For those of you who would like to know more about genetics and perhaps receive genetic counseling I recommend that you pop over to Genetic Counseling  dot by clicking on this link. (a new window will open).  There is some excellent information available.


{ 1 comment… read it below or add one }

Gill Townend September 25, 2013 at 12:54 pm

Dear Sandy,
we are very pleased to see that several parents from South Africa have registered for the forthcoming Third European Rett Syndrome conference, to be held in Maastricht, The Netherlands, from 17th-19th October 2013. We are placing logos of the parent associations that are represented at the conference into our book of abstracts and onto our conference website, and would be pleased if you could send us an image of your association logo that we can use.
Thank you very much for your support.
Best regards,
Gill Townend
On behalf of the organising committee

Gill Townend, CertMRCSLT, M. Phil., B. Med. Sci. (Speech)
Researcher and Augmentative & Alternative Communication Expert, Rett Expertise Centre
Maastricht University Medical Centre, Maastricht, The Netherlands


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