About Danijela Szili

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Newly founded Croatian Rett Syndrome Foundation - Silent Angels and their first big event in Rijeka

Newly founded Croatian Rett Syndrome Foundation – Silent Angels and their first big event in Rijeka

From October 17th to 19th Neurology forum for neurodegenerative diseases was held at the University Campus in Rijeka, organized by Dr. Vuletić, the head of the Neurology clinic based in this beautiful city on the Adriatic coast. Despite the fact that Rett syndrome is not a neurodegenerative disorder Dr. Vuletić invited Prof. Curfs and Smeets […]

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Both Artistic and Therapeutic Rett Summer Camps in Hungary organized by Hungarian Rett syndrome Foundation

Both Artistic and Therapeutic Rett Summer Camps in Hungary organized by Hungarian Rett syndrome Foundation

Since its foundation in 1995, the Hungarian Rett Syndrome Foundation has been organizing therapeutic summer camps for children and adolescents with Rett Syndrome. The girls are all with multiple special needs and in need of full care, so organizing the camp involves a lot of coordination and preparation. In Hungary, it is very difficult to […]

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7th South East European Rare Disease Conference

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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EURORDIS Winter School 2019

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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Rett Rome Report

Rett Rome Report

Rett Rome 2018 took place from September 27-29th and gathered 170 participants from 4 continents and 17 different countries. The aim of this very well organized scientific meeting on the 27th and 28th was to provide a platform for discussion on recent advances in basic, translational and clinical research on Rett syndrome. The meeting also […]

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AIRETT International Call for Research Projects on Rett Syndrome

AIRETT International Call for Research Projects on Rett Syndrome

AIRETT, the Associazione Italiana Rett Onlus (no-profit Italian Rett Association) that brings together the families of children affected by Rett syndrome (RTT), intends to contribute to the development of basic research activities, applied clinical research, and development of new rehabilitation approaches focusing on RTT (MeCP2, CDKL5 and FOXG1 genes). We are seeking grant applications that […]

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Rett Meeting Rome 27-29 September 2018

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/

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country updates the stairs

Berlin Congress Report

Country update Berlin 2017 – by Stella Peckary A poster walk of 27 posters with a country update of 25 Rett-Association took place on Friday, during lunch time. A representative of each country was invited to speak briefly about recent activities, National Centres for Rare Diseases and Rett specialist services in his their country. The […]

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European Rett Syndrome Congress in Berlin

European Rett Syndrome Congress in Berlin

5. European Rett Syndrome Congress, 2.-4. November 2017, Berlin The unique ambience of the Rett Congress in Berlin: international experts in a cooperative interchange with concerned parents “Connecting people – exchanging knowledge and experience!“ This was the motto of the 5th European Rett Syndrome Congress, which took place at the beginning of November 2017 in […]

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