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Coronavirus + Leukodystrophy: ELA’s double battle

ELA families need our support Today, ELA families are fighting a double battle: coping with the disease affecting their children and protecting them from the Covid-19. In addition to the constraints of increased confinement at home, there is the added burden of daily care and the anxiety of the futureRead More → ...

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Leukodystrophies in the time of Covid-19 : a double battle

Solène and Margaux are twin sisters. Margaux has leukodystrophy. She has never been able to speak or walk. In spite of Margaux’s illness, Solène loves spending time with and playing with her sister. Today, Margaux’s parents have to face not only their child’s illness, but also the difficult conditions ofRead More → ...

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International Day for Rare Diseases

International Day for Rare Diseases, an unprecedented event organised by ELA International at the ICM Paris On the occasion of International Rare Disease Day, on 28 February, ELA organised an original meeting, in partnership with the research laboratory ICM – the Brain and Spinal Cord Institute at the Pitié Salpêtrière.Read More → ...

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Crystalfoot, a club of major donors

On 6 May 2019, the Crystalfoot club was launched in Luxembourg by Norbert Becker, member of the ELA International Advisory Board and Guy Alba, President. Crystalfoot is a collection of crystal feet made from the footprints of exceptional football players. The first of this collection, made free of charge byRead More → ...

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Research Symposium on 2 and 3 December in Luxembourg

World experts on leukodystrophies brought together by ELA International to advance research. ELA International has brought together about thirty eminent researchers from different countries (United States, Italy, Spain, United Kingdom, Germany, Holland, France,etc.) to enrich their mutual approaches to leukodystrophies (degenerative brain diseases which affect 20 to 40 births perRead More → ...

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ELATHON 2020 – Operation Gendarmerie

Within the framework of international cooperation between Spanish students of the Guardia Civil and French gendarmerie students, a mythical race was organised in Valdemoro (20 km south of Madrid) on the weekend of 23rd and 24th May 2020. It was a 24-hour relay foot race in teams of 10 participants.Read More → ...

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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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