A virtual meeting focused on the leukodystrophy cerebrotendinous xanthomatosis CTX, Unlock CTX
The United Leukodystrophy Foundation (ULF) in the United States, in partnership with ELA International, organizes the Unlock CTX virtual meeting focused on the leukodystrophy cerebrotendinous xanthomatosis CTX, under the US Food and Drug Administration’s (FDA) Patient-Focus Drug Development (PFDD) program. It will take place on September 14, 2021 in theRead More →...
Families/Researchers virtual meeting: a huge success
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 the global pandemic. The health context having made it impossible to organize the Families/Researchers meeting in person, ELA has had to adapt toRead More →...
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
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 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
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 →...
