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The ELA family reunited – Hann. Münden

From 11 to 13 October, many members of the ELA family gathered in Hann. Münden to interact with doctors and gain new knowledge. The 2019 meeting brought together the largest number of members since the founding of the Bundesverein Leukodystrophie Association and its successor, ELA Deutschland eV. Thank you toRead More →...


ELA Switzerland Family Weekend 2019

From 9 to 11 August 2019, the families of ELA Switzerland met at the Hotel Cailler in Charmey (canton of Fribourg) for a recreational stay.On Friday evening, the 60 or so participants were welcomed by the President of ELA Switzerland, Myriam Lienhard. Saturday morning was devoted to parents’ meeting, whichRead More →...


The famous ELA Dictation

Nicolas Mathieu, winner of the Goncourt 2018 prize for his novel ’Their Children After Them’, did us the honour of writing ELA’s 16th dictation.The inspirational and poetic dictation was , magnificently illustrated by Baru, Grand prix d’Angoulême 2010. • Nicolas Mathieu: I am an author andI haven’t done a dictationRead More →...


13th Jogging-walk for companies University of Liège Science Park

On Friday 7 June at l’Interfacethe annual big business-university jog in the Liège Science Park for the benefit of ELA took place. Our godfather Didier Boclinville, who we can always rely on to lift everyone’s spirits, faithful to the post for a great time, was with Guillaume de Miomandre, touchedRead More →...


Solidarity rake in Valladolid

On 18th and 19th May, the 4th rake in favour of the European Leukodystrophy Association took place at the Real Colegio PP Agustinos Filipinos in Valladolid. This rake takes place every two years with various activities that appeal to all participants. Throughout the weekend, a multitude of activities were planned,Read More →...


ELA Germany Family Weekend 3 days “in the bush”

The families from ELA Germany met in June for 3 days in the middle of the forest in Lauterbach, 80 km from Frankfurt. The 60 participants had an unforgettable experience in the theme park “Life Camp Lauterbach”. Parents and children could discover nature in all its forms in the forestRead More →...


Noémie’s Hope Benefit Concert

En mémoire de leur petite Noémie, emportée par la maladie de Krabbe, la famille Lordet organise depuis 2003 l’événement Noémie’s Hope Benefit Concert. Cette année, le concert a eu lieu le 4 mai 2019 au Théâtre Baarburg (canton de Zoug) avec le soutien de l’École Internationale de Zoug et Lucerne.Read More →...


Put Your Sneakers in School 1st edition

This year for the first time since ELA Luxembourg was recognised as a public utility, “Mets Tes Baskets” made its debut in the school, with the help of the Parents’ Association. Vauban, a French school in Luxembourg, under the guidance of sports teachers Jonathan Perfetto and Maxime Gaccio, and withRead More →...


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