2nd to 5th October 2024 in Queensland, Australia The Rett Syndrome Association of Australia are delighted to announce that after a couple of postponements due to the pandemic the congress is very much back on! We will keep you informed here as updates are shared but also check out their website . The programme is […]
RSE board are very pleased to present an overview of the March 2023 Network Support and Research event (see the document below). We would particularly like to draw your attention to the outcomes and action plans for each country that participated. In addition, since the event, the presentations have been translated into Spanish, Italian, Finnish, […]
Following our Network Support and Research Event we would like to share a video of Walter Kaufmann presentation “Burden of Illness in Rett Syndrome: Initial Evaluation of a Disorder-Specific Caregiver Survey”. In this talk, Walter Kaufmann will present an overview of the Burden of Illness in Rett Syndrome survey. Previous studies have shown that individuals […]
Airett are delighted to announce that after an absence of two years they will be hosting a hybrid event on 10th and 11th June 2022. THE THEMES OF THE CONFERENCE Scientists and researchers will provide updates on the latest clinical trials and what is on the horizon. A special attention will be paid to the […]
First and foremost, thank you everyone who joined our GA meeting. Even though online events have their limitations, we are very happy about your active participation and engagement in the discussions. For everyone who participated and would like to look back, as well as for those who missed it, please find below the interactive slides […]
Feels like a rush hour! In just a few weeks we´ve participated in 3 different events: May 12-14 – EURORDIS Membership meeting During this 3 days online event different countries and representatives of various rare diseases shared their thoughts, struggles and experiences of this extraordinary pandemic year. Despite all the challenges of COVID we all […]
We are all hoping this will go ahead in 2022! Please make a note in your diary and keep an eye on the website as we update you with more information about the event. https://rettworldcongress.org/
The 6th European Rett Syndrome Conference took place in Tampere, Finland on September 27th and 28th. The Finish Rett Syndrome Association did an excellent job and was incredibly hospitable to around 180 participants from 18 countries worldwide. Over the course of these two days, participants were invited to join parallel sessions. Many excellent speakers well-known […]
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 […]
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 […]
