EURORDIS Summer school 2013 in Barcelona

EURORDIS (European Organisation for Rare Diseases) launched the Summer School in 2008 to empower patients’ representatives in the areas of clinical trials and EU regulatory affairs. EURORDIS’ training programs and resources are designed to strengthen the capacity of rare disease patients’ representatives. Training empowers patients’ representatives to advocate effectively for rare diseases at both the […]

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EURORDIS Membership Meeting 2013 and DITA Task Force meeting in Dubrovnik

By Danijela Szili. EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 585 rare disease patient organisations in 54 countries covering over 4000 diseases. Every year EURORDIS organizes its Membership Meeting in a different European city. This is an occasion for patient representatives to gather and learn from each other. The EURORDIS Membership Meeting 2013 […]

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Austrian Rett family days

By  Stella Peckary.   In the middle of Austria, in Hipping, on the  Attersee-lake, 21 Rett-Families from all parts of Austria came together from June 14th -16th, to spend a nice weekend. On Friday afternoon was the Board meeting to talk about important agendas of the Association. After Dinner, Gerhard and Stella talked about activities […]

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25th Birthday of the French Rett Syndrome Association

By Martine Gaudy During three days, from 18th 20th May, the French Rett Syndrome Association celebrated their 25th Anniversary. Over 320 people, including 65 girls, gathered in Nantes for this beautiful event. This was an exceptional get together, as grandparents had been specially invited for this occasion, together with parents of course, siblings, and friends. […]

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Capture d’écran 2013-05-28 à 19.48.20

The EUPATI 2013 Conference: A Vision For 2020

By Olga Timutsa. The EUPATI 2013 Conference: A Vision For 2020 took place in Rome in April 19, 2013. The Rome conference, held just 14 months after the launch of EUPATI (European Patient’s Academy on Therapeutic Innovation). More than 180 delegates from 28 countries were there to hear about the plans under way for three […]

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