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Czech Republic Association family event

By Michal Kozisek. The 8th Rett Community Czech Family event took place from June 27th to July 4th at Hodonin near Kunstat in the Moravian region. We have set a record this year. More than 80 people – 15 families with Rett syndrome girls, 16 caretakers and other organisers. Rich 7-days programme contained: –          Presentations and workshops for […]

Eurordis Membership Meeting 2015

By Danijela Szili. Each year, the EURORDIS Membership Meeting provides over 200 patients, patient organisations, policy makers and other stakeholders with networking opportunities and capacity-building workshops to improve the lives of those living with a rare disease. The EURORDIS Membership Meeting workshops are designed to allow patients to develop the knowledge and ability to advance […]

5th Catalan Rett Syndrome Day

The Quirón Foundation, with the help of the Catalan Association for Rett Syndrome, organized the fifth edition of the Conference on Rett syndrome, with the aim of providing care for girls, the necessary information for early diagnosis and better treatment of the disease. This new edition, which took place on Saturday, April 11 in Barcelona, […]

2015 Congress for Consensus in Pediatrics & Child Health

The 4th Global Congress For Consensus in Pediatrics & Child Health (CIP2015) took place March 19-22 in Budapest, Hungary. Dr Gerard Nguyen was representing Rett Syndrome Europe, the French Rett Syndrome Association and the Hungarian Rare Diseases Alliance. Dr Nguyen gave a talk entitled “Rare Diseases: From Best Care to Innovative Cure”. The presentation pointed […]

Press conference on the presentation of the next World Congress on Rett syndrome

By Olga Timutsa. On January 30, 2015 in the Civic Chamber of the Russian Federation on the initiative of the Civic Chamber of the Republic of Tatarstan and the Association for Assistance to Rett syndrome patients the following events were held: 1. Press-conference on presentation of the World Congress on Rett syndrome in Russia 2. Roundtable on «Medical and social support and quality of life for girls with Rett syndrome» topic […]

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