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New studies online

 Study on the quality of life of women affected by X-linked adrenoleukodystrophy A new study is available on Leuconnect! In partnership with ELA International and under the responsibility of Professor Wolfgang Koehler in Germany, the team from the University of Leipzig is opening a study on the quality ofRead More →...


A new discovery in Zebrafish

A grant funded by ELA International: a new finding in zebrafish could help us better understand how leukodystrophies develop. Leukodystrophies are rare genetic neurological diseases affecting the white matter of the brain, the myelin. They result in the loss of all vital functions and cause serious physical and mental disabilitiesRead More →...


Didier Défago, new honorary member of ELA Switzerland :

Myriam Lienhard, Yan, Arnaud and Didier Défago It was on the occasion of the 2020 Family Weekend that Myriam Lienhard (President of ELA Switzerland) presented Didier Défago (patron of ELA) with the title of Honorary Member of ELA Switzerland. From the moment he met Yan and Arnaud at the firstRead More →...


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 →...


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 →...


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 →...


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 →...


Research Symposium on December 2nd and 3rd 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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