Rett Syndrome Community

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stellapeckary
moderator

CONGRESS IN VIENNA RTT 50.1 - September 15 - 17 2016

The Programm of the Congress of the 50th anniversary of the First Publication on Rett Syndrome is now online.
www.rett2016.wien

danijelaszili
moderator

It was a great event, very emotional also. I wrote a long report about it and we published it on Rett Syndrome Europe's website
http://www.rettsyndrome.eu/news/vienna-rtt...

stellapeckary
moderator

SUDEP - Sudden unexpected death in epilepsy

Refractory Rett syndrome patient with 16 years passed away in his sleep. Who has experience with it.

stellapeckary
moderator

Austrian Rett syndrome society family reunion

A detailed report on the great June 2016 family reunion (in German) can be found on our Home Page
http://www.rett-syndrom.at/rett-familientr...

ÖRSG - Rett Syndrome Austria

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Tihana
moderator

Rett syndrome events upcoming!

Dear members of the Rett syndrome community,

next week, two big Rett syndrome events will be organized by Rettsyndrome.org.

You can find more information on the following links:
https://www.rareconnect.org/en/community/r...
https://www.rareconnect.org/en/community/r...

danijelaszili
moderator

European Rett Syndrome Congress in 2017

Dear Rett Community,

we would like to inform the Rett Syndrome community, that the German Rett-Syndrome Association will organize the next European Rett-Syndrome Congress (ERSC) . The Congress will be placed in Berlin from 02. – 04. November 2017.

During this event the German Rett-Syndrome Association will celebrate their 30th anniversary.

Further information will follow in due time.

Please save the date!

The contact person for the German Rett Association is:
Wilfried Asthalter
Coordinator for International Affairs
Elternhilfe für Kinder mit Rett-Syndrom in Deutschland e.V.
Hinter dem Hain 10
DE-34327 Körle
+49-5665-4833
w.asthalter@rett.de

agerwachsene@rett.de

www.rett.de

stellapeckary
moderator

I am looking forward to this very interesting Congress

stellapeckary
moderator

Family gathering of the Austrian Rett-Syndrom Association ÖRSG

The annual Family Gathering will take place in Hipping on the Attersee from 11. to 12. June 2016. Planned are interesting lectures as well as a joint excursion. We have arranged for optimal care for all girls, boys and also for all siblings. We are looking forward to meet many families. Please visit our Website at www.rett-Syndrom.at

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Rett Syndrome Network

Hello. I am the father of a girl who is suffering from Rett Syndrome. I am awaiting an answer from the genetic research but other possibilities, simpler, could be within our reach and would also be worth exploring. We are all experts in our daughters. If we mutualized our experiences, your daughter and mine will have everything to gain.
I wish to create together with you a network to make our daughters move forward.
My phone number is on the website below. Call me, so you will understand better how sincere I am and my motivation as a dad.
http://parileitao.wix.com/reseaurett
I would appreciate greatly if you could forward this to the largest number of people. Thank you. Jérôme

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