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Stories, statements and updates from Rett Syndrome Europe and our member associations across Europe.
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Come Closer: a photo exhibition and auction for the Girls with Rett Syndrome
By Danijela Szili. In July 2013 a special venture has taken place in the organization of the Hungarian Rett Syndrome Foundation. We have envisioned a series of 10 photographs, each illustrating a famous actor and a girl with Rett syndrome. Our purpose on one hand is to raise awareness about this rare genetic disease, and also to…
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Life at school in Czech Republic for Rett girls
Rett girl pupils at the primary school ZS Zahradka In the previous past years, seven girls with the Rett Syndrome (RTT) have been attending the primary school “Zahradka” in Prague. It is a rather unusual experience due to a frequency of occurrence of girls with RTT in Czech population. Thanks to this experience we had…
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Rett Syndrome Europe wishes you a happy holiday season
Wishing you warm holiday greetings from RSE
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A research consortium against RETT syndrome
PRESS RELEASE Milan, December 3, 2013 – It was held at the headquarters of the IRCCS – Istituto di Ricerche Mario Negri in Milan, the first operational meeting dell’AIRETT RESEARCH TEAM Consortium created by renowned Italian research institutes that are involved in a joint effort to study Rett Syndrome, a rare disease, little known to the general public, for…
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Save the date: The 7th European Conference on Rare Diseases & Orphan Products
ECRD 2014 – 8 to 10 May 2014 Andel’s Hotel, Berlin, Germany Save the date! more infos here.
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3rd European Rett Syndrome Conference “Research Update and Preventive Management”
By Martine Gaudy and Thomas Bertrand – Maastricht – Netherlands – 17 to 19 October 2013 After those of Milan (2009) and Edinburgh (2010), the third European Rett Syndrome Conference (ERSCM 2013) was held in Maastricht in the Netherlands. ERSCM 2013 is an initiative of the GKC (Gouverneur Kremers Centrum), Stichting Terre (Dutch Rett Syndrome Foundation) and NRSV (Dutch Rett Syndrome Association)…
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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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