Events

Hungarian Rett summer camp vibes

The Hungarian Rett Syndrome Foundation has been organizing therapeutic summer camps for girls with Rett Syndrome every year since 1995. This year they took place in Hajdúszoboszló on two occasions in July and August. Organizing a holiday with activities for the children is an important part of the foundation’s parental support programs, because during the summer […]

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 […]

Russian Rett Syndrome Association – October Awareness Event

In the framework of the project of the Russian Rett Syndrome Association (2020-2021, No. 20-1-027505, Directorate: Development of Public Diplomacy) “Mutual Support: International Cooperation on behalf of Children”, the project team visited Minsk, Belarus on 24-27 October 2020. The Russian project team, consisting of the coordinator, director, operator and medical expert, was in Minsk at […]

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 […]

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 […]

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