News
News
Stories, statements and updates from Rett Syndrome Europe and our member associations across Europe.
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Rett UK celebrating their 30th Anniversary
From left to right – Rachael Stevenson (Reverse Rett), Mark Bailey, Becky Jenner and Stuart Cobb By Becky Jenner. Rett UK were delighted to celebrate their 30th Anniversary with a Family Weekend at the Hilton Hotel in Northampton. Attended by over 200 families and professionals representing key disciplines across health, therapeutic interventions and research the weekend had…
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4th European Congress on Rett Syndrome: final program
Dear friends, the final program of the upcoming European Congress on Rett Syndrome can be visualized at a glance on the congress website. A full printable brochure can also be downloaded here. See you in Rome!
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RTT50.1: Celebrating the 50th anniversary of the first publication on Rett Syndrome by Andreas Rett
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Share your Stories #WWYG
It is not too late! Let’s make October awareness month a success! Tell the world WHY WOULD YOU GIVE to Rett syndrome charities/associations. If you wish that people support your organisation, ask them to share what would motivate them to give, whether it’s running a marathon, signing a check, organising an event or taking part in a clinical trial. If you…
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Please help maintaining the Rett Syndrome Database Network
Dear friends, As President of Rett Syndrome Europe, I am writing to you today to ask for your Association’s support for the European Rett database located in Italy: the Rett Syndrome Database Network (RSDN). The simple fact is that vital research on Rett syndrome or clinical trials cannot be easily achieved without collecting and analysing…
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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…
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European Conference in Rome – a message from the RSE board members
Dear Members of the Rett Community, We are very proud to inform you that the next Rett Syndrome European Conference will take place in Roma from 30th of October to 1st of November 2015. This Conference is organized by the Italian Rett Syndrome parents Association AIRETT, with the help of Rett Syndrome Europe. On this occasion, we…
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La Course Des Héros 2015, Paris & Lyon, France
In Paris and Lyon, June 2015 took place the annual event of The Race of Heroes (La Course des Héros), where people can run 6 or 10 km to raise money for their favorite association. The idea is simple, to be able to run and support one association, one would need to raise at least…
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Austrian Rett-Syndrome Association Family weekend
By Stella Peckary. This year again many Rett-families joined a common weekend. 19 Rett-Girls and boy had their own attendant. This gave us parents the chance to attend the program. We all were lucky with the weather, so many of the attendants took the chance to go for a walk with the girls. On Friday…
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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…
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