Rett Syndrome Community

Meet, discuss & support other patients or families living with Rett Syndrome. Contribute to topics, or just share what's on your mind.

Start a discussion now (you must be signed in)
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

Notice: This text content has been translated automatically by a third-party service.

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

Notice: This text content has been translated automatically by a third-party service.

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

Notice: This text content has been translated automatically by a third-party service.

martacampabadal
moderator

Rett Syndrome community map

Hello everyone!

We are very happy to announce a new update of the community.

Maybe you have already checked out that in the Members section there is a new world map. It is a more visual and fast way to contact other community members.
https://www.rareconnect.org/en/community/r...

3 important things:

1) To appear on the map you only have to edit your profile and add the location. If you already have done it, you can also specify your city, even zip code.
https://www.rareconnect.org/en/community/n...

2) Unless you have the profile marked as public, the information on the map is only visible for members that have registered to the community. This means that visitors may see the map but not the spots and the links.

3) If you wish, you can also make your spot in the map only visible for your friends within the community. This option can be changed always from your profile.

If you have any question, leave me a comment below!

Thanks Marta, this is great :-)