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EIB donation finances rare disease research project

EIB donation finances rare disease research project

Every week in Europe 20 to 40 children are born with a form of rare disease called leukodystrophy that attacks and destroys the central nervous system (brain and spinal cord) in children and adults. But research is improving thanks to a € 26 200 donation made in 2018 to theRead More → ...
Health box swiss made

Health box swiss made

The HEALTH BOX SWISS MADE, created by ELA Suisse, contains 20 surgical masks, 1 hydroalcoholic solution and 2 mask cases. To produce this health kit, ELA Suisse has enlisted the help of three Swiss companies sensitive to ELA’s cause: Distillerie Louis Morand & Cie for the hydroalcoholic solution, Amyna3 forRead More → ...
Call for proposals ELA 2021

Call for proposals ELA 2021

Call for proposals ELA 2021 ELA International represents national ELA associations from different countries that contribute together to the financing of research on leukodystrophies. It is run by parents and /or patients affected by leukodystrophies. Accordingly, ELA International wishes to focus funding on programs devoted to the improvement of theRead More → ...
New studies online

New studies online

The first study on the impact of metachromatic leukodystrophy (MLD) on the lives of families is open on Leuconnect! In partnership with ELA International, and joined by ARGO Santé, a health research and consulting firm, ORCHARD Therapeutics is launching a study on the experiences of parents of children with MLD whoRead More → ...
A new discovery in  Zebrafish

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 :

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

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

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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