Conferences

9th World Rett Syndrome Congress

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 […]

The Burden of Illness Study in Rett Syndrome

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 Conference

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 […]

A busy May for RSE!

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 […]

6th European Rett Syndrome Conference, Tampere Finland

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 […]

7th South East European Rare Disease Conference

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 […]

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