By RSE board member and ePAG Yvonne Milne The EURORDIS Winter School that took place in Paris in March was a great opportunity for those attending to share information and network with other rare disability group representatives. We soon learnt that we had so much in common, with shared values and missions. As a result […]
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 […]
RSE is represented at the inaugural Eurordis Winterschool Paris, march 2018
As a RSE Board member and ePAG patient representative for the ITHACA ERN, I was privileged to be invited to attend this new initiative, which was held at the IMAGINE Institute, Paris March 19 – 23. It was financed through the EU funded Solve-RD project, of which EURORDIS is a partner. The aim of the […]
Enhancing collaborations between Rett Centers
Representatives of the recently opened Rett Center in Paris and the Maastricht Rett Expertise Center meet together on 15/02/2018 with the president of Rett Syndrome Europe in Paris to discuss new ways of working together. The team of Paris was represented by: Dr Nadia Bahi Buisson, Dr Marie Hully, Prof Brigitte Fauroux, Dr […]