Author: T.Bertrand

Eurordis CEF Workshop 26-27 October 2017 report

By Thomas Bertrand. During the first day, Councils of European Federations (CEF) and Councils of National Alliances (CAN) gathered in Paris to learn about the recent work from Eurordis (RareConnect, RareBarometer, an update from the Eurordis position paper on social policy and the announcement of the next ECRD in Vienna 2018). An Update on ERN […]

Family Day of the Austrian Rett-Syndrome Association

By Stella Peckary. Sept. 23rd, 2017 A small group of Rett-Parents with their children came together at the beautiful site of “Seminarhotel Kletzmayr” in Styria. Because of the warm weather the activities for the Rett-Girls and their siblings took place outside. The carers for the Rett-girls/boys are trained experts for impaired people and have been […]

Presentation of the French “Rett Centre”

     Physician coordinator: Pr Nadia BAHI BUISSON, neuropediatrician Health Care Coordinator: Elisabeth CELESTIN Due to their multiple disability status, most families lack landmarks to identify professionals and have difficulties to organise path of care, which is often complicated and full of obstacles. The Rett Centre is there to accompany them.    1st mission: Care […]

29th French National Rett Days

By Thomas Bertrand. 29th French National Rett Days On 7Th and 8th October took place the French National Rett Days. During the weekend around 250 people gathered in Paris to meet and listen to scientific talks and participated to workshops. Professor Milh (Hopital La Timone – Marseille) started the weekend with a full story about […]

European Rett Syndrome Congress, Berlin: connecting people – sharing knowledge

CALL FOR ABSTRACTS – DEADLINE EXTENDED Scientific knowledge at the highest levels; experts from Europe, the USA and Australia, and affected families in an exchange of ideas The deadline for abstracts has been extended until 31.08.2017 Genetics and research, transition and aging, activities and participation, pain, orthopedics and physiotherapy as well as new treatment options… […]

A “deep breath” for parents – the 2017 Family weekend in Austria

By Stella Peckary. The very popular and pleasurable family weekend of the Austrian Rett-Syndrome Association was attended by about 20 Families with Rett-Syndrome Children (Ladies), their siblings and Carers. It started on Friday afternoon with the annual Board meeting. The come together and exchange of private information and experiences of family members is always the […]

EURORDIS Membership Meeting 2017 – Full report

By Danijela Szili. EURORDIS Membership Meeting 2017 This year’s membership meeting took place in Budapest from 19-20 May. It gathered around 300 participants from all over Europe and some from USA, Iran, India, Canada and China. It started with EURORDIS General Assembly for members only. As it is the case every year the Activity Report […]

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