Thanks to ELA massive investment in research on cerebral adrenoleukodystrophy (CALD), the team of Pr. Patrick Aubourg and Dr. Nathalie Cartier published in 2009 the first results of a gene therapy trial on cerebral adrenoleukodystrophy conducted in France. This research was extended internationally by the Bluebird Bio laboratory which conductedRead More →

Every year, ELA organizes a meeting in Paris which brings families and researchers together affected by leukodystrophies. This event could not take place in 2020 due to thethe global pandemic. The health context having made it impossible to organize the Families/Researchers meeting in person, ELA has had to adapt toRead More →

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 →

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 →

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 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 →

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 →

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 →

Leuconnect multilingual Already accessible in French and English, the Leuconnect platform is now open in 3 new languages. With the financial support of the Roche Foundation, it is now available in Spanish, Italian and German. The members of the different ELA branches (Spain, Italy and Germany) share information with theirRead More →

In front of several hundred people gathered for the event, the 14-year old girl, who is a karting enthusiast, hit the gas to climb up a ramp and then fell 5.5 metres further down, passing over two cars. The feat was partly achieved thanks to her father Didier, a mechanicsRead More →