This conference took place on the beautiful lake Ohrid. Ohrid and Lake Ohrid were accepted as Cultural and Natural World Heritage Sites by UNESCO. Ohrid is one of only 28 sites that are part of UNESCO’s World Heritage that are Cultural as well as Natural sites. Regional meeting for rare diseases patient advocates took place […]
EURORDIS Winter School 2019
The second edition of EURORDIS Winter School was an event I have longed for months. The training was about scientific innovations and translational research and was held in the prestigious Imagine Institute in Paris. I was very happy and honoured to be one of the 30 selected applicants from the 137 that applied. I am […]
Austrian Rett-Syndrome Association (ÖRSG) Family Weekend 2018
On the weekend from June 22nd to 24th 2018 the yearly family weekend took place in the wonderful surroundings of Attersee-Lake and the pre-alpine landscape. Nearly 100 attendants – parents, Rett-girls, Rett-boy, siblings, carers and speakers were very pleased and appreciated the “come together” of the Rett-families. During the Board meeting on Friday afternoon, the […]
Rett Meeting Rome 27-29 September 2018
Italian foundation ProRett Reserca is organizing an international scientific meeting in Rome this year. For more details please check the website of the event: https://www.rettrome2018.org/
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 […]
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 […]
2017 summercamp in Sæby, Denmark from Rett Syndrome Norway
Text by Trine Pernille Krüger. Photos by Therese Steinnes Christensen. For the 7th time NFRS (Rett Syndrome Norway) arranged a summer- camp for its members. Rett-girls and their fa- milies travelled to Sæby, Denmark from july 30th. to august 6th. This year 18 families participated, 4 of them from Denmark. For some families this […]
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 […]
The actual situation and tendencies in Research: Santander 2017 – Highlights
By Thomas Bertrand. SANTANDER (Spain) 10-13.07.2017 In the Beautiful city of Santander, at the historical Palace of Magdalena, took place a conference on Rett Syndrome. The aim of the conference was to refocus the fundraising in the country for research on Rett syndrome in creating a common fund between the Spanish and Catalan associations: FINRETT. […]