Archives News

World Leukodystrophy Day

On 28 September, ELA Spain participated in the World Leukodystrophy Day which was organised at the Fair of Associations in Coslada (city of Madrid). Throughout the day, ELA Spain staff organised a stand next to a metro exit – an ideal place to raise awareness of leukodystrophies among passers-by. DuringRead More → ...

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Weekend respite at Center Parcs for families

The weekend of 27th to 30th September was the long-awaited weekend of respite and relaxation for ELA Belgium families at the Vossemeren Center Parcs. On Saturday morning a breakfast was organised, followed by a plexi painting workshop led by Manuela Thys, the wife of Pierre Thonon, who has Leukodystrophy. TheRead More → ...

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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 → ...

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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 → ...

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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 → ...

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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 → ...

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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 → ...

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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 → ...

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