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Polish Summer Camp

By Eleonora Misiarz (eleonorabaran@wp.pl) The summer camp is organized regularly in June by the Polish Rett Association. Last couple of years we have been meeting in Mielno on the Polish Coast. The camps are a good opportunity to meet other parents and their kids. The idea for the meeting of the families is more to get […]

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RSE Seasons Greetings

May health and happiness be yours in all seasons!

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Rett UK bangs the drums for families in South East England

November 10th saw over 180 people from the South East of England, arriving at The School for Profound Education at the Children’s Trust in Tadworth. Families, specialist medical and therapeutic practioners, staff and board members of Rett UK took part in the largest gathering of the Rett Community in England for many years.   There […]

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The 2012 RSE General Assembly

  The 17th November took place the Rett Syndrome Europe general assembly in London, UK where Lorna Jaffa, representative from RettUK, welcomed the delegates to the meeting. 14 countries were represented that day and two researchers; Angus Clarke and Laurent Villard were also invited. Member countries each gave a brief report about their associations. Martine […]

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6th annual DIA Clinical Forum

DIA Clinical Forum in the Hague 2012 – A report from Danijela Szili For more info check http://www.pharmaceutical-technology.com/contractors/consult/dia1/ DIA is a neutral global nonprofit association that provides knowledge resources across the full spectrum of medicinal product development. It organizes Conferences and Forums for all the stakeholders including patient advocates. This years Clinical Forum took place […]

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First EUPATI Workshop

EUPATI (European Patients’ Academy on Therapeutic Innovation), is a 5 year-project funded by the Innovative Medicines Initiative (IMI), a joint undertaking of the European commission and EFPIA (European Federation of Pharmaceutical Industry Associations). It is led by the European Patients’ Forum (EPF) in collaboration with the VFA (Verband der Forschenden Arzneimittelhersteller, Germany) and a consortium […]

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Rett family conference in Moscow

On September 15th, in Moscow, the Russian association has organised a Rett family conference day where parents, doctors and teachers were invited. 65 Parents coming from all places in Russia as well as from Ukraine and from Kazakhstan were involved. Some Rett Friends from France and Finland were also present. Organizers of the conference were […]

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Summer Camp for Rett Girls in Hungary

By Danijela Szili. This event took place during the first week of July in a little town called Agard on the Velencei Lake near Budapest. The Hungarian Rett Syndrome Foundation made this special holiday for Rett girls possible. We rented a house near the beach on the lake. The house was well equipped, with enough […]

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