RSE 2014 General Assembly in Vienna – UPDATE!

Dear Members of RSE,

All members of the Rett Community are warmly invited to the next General Assembly of Rett Syndrome Europe that will take place in VIENNA – Austria on:

Saturday 15th November 2014, 9 30 am

Venue: Kolping Wien Zentral 1060 WIEN, Gumpendorfer Strasse 39

Seminar Room: Kardinal König Saal, Hausteil 2, Stiegengasse 10

In order to plan your travel and stay in Vienna, please download original announcement, the updated invitation, the updated program and the evening social program.

If you are planning to attend, please fill the registration form and send it back by email to

Agenda for the GA

9 30 am 

1               Welcome address and introduction of members

2               Minutes of the last GA

3               2013-2014 Activity Report from the RSE Board

4               2013 Financial Report from RSE

5               Election to the board

6               AOB and Action plan for the future

11 00 am

Presentation of Rett Clinics and Rett Centres in Europe by Association representatives – Part 1 (Draft – subject to change)

– Rett clinics in Austria by Stella Peckary

– Rett clinics in UK by Lorna Jaffa

– Rett clinics in Denmark by Anne Marie Bisgaard

12 30 pm Lunch on the premises offered by the Austrian Association

1 30 pm

Presentation of Rett Clinics and Rett Centres in Europe by Association representatives and Rett Clinics in USA by Paige Nues, Director of family empowerment of IRSF International Rett Syndrome Foundation – Part 2 (Draft – subject to change)

– Rett clinics in Italy Oliviero Dell’Oro

– Rett clinics in Catalonia by Pedro Dias Neves Rocha

– Rett clinics in Germany by Wilfried Asthalter

– Rett clinics in France (project and clinical trials) by Elisabeth Celestin and Thomas Bertrand

– Rett clinics in Sweden by Zuzanna Slotwinska

– Frambu Resource Centre for Rare Disorders in Norway by David K Bergsaker

– Rett clinics in Northern America by Paige Nues and Prof. Percy (through Skype connection)

4 pm coffee break

4 30 pm Discussions and perspectives

7 30 pm Buffet in the historical tavern of Vienna ‘The 12 Apostelkeller’ (30 euros)

NOTE: During the session breaks we will have the great pleasure to have Romana Malzer from the Austrian Association and mother of Isabella, 11 years old. Isabella communicates using a Tobii-device with a head-tracker. AAC (Augmentative and alternative communication) has improoved the family life and since 2010 Romana is working for LIFEtool. LIFEtool is a non-profit organization and is offering AAC-Counseling & training: professional, comprehensive and free from commercial interest AAC-consultations. Romana has an excellent knowledge about AAC and its use for the Rett-patients. Romana will present her ideas for low-tech-AAC, the use EyeTracking, and if time permits it, some iPad tips and tricks. You can follow Isabella’s journey by visiting her blog


You can book a room at the venue  (

When booking, please use the reference :  „ Event Österreichische Rett-Syndrom Gesellschaft“

Other hotels close to the venue:

  • Hotel Drei Kronen Wien City

„Viennese Naschmarkt Hotel“ Schleifmühlgasse 25, 1050 Wien (

  • Ibis Wien Mariahilf

Mariahilfer Gürtel 22-24 1060 Wien (

  • The Hotel 1060 Vienna

Webgasse 23, 1060 Wien (

RSE 2014 General Assembly in Vienna – UPDATE!
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