Sign the petition to save children from being denied treatment for commercial reasons
Mathéo could have been cured with a gene therapy invented in France. He was denied treatment for commercial reasons. To prevent this story from happening again, a mother of ELA calls out the French Ministers of Health and Research, as well as the Secretary General for Investment-France 2030 through aRead More →...
ELA Family Weekend Switzerland 2023
From August 4 to 6, 2023, the ELA Suisse team welcomed the association’s families to the Hôtel Cailler in Charmey (canton of Fribourg). On Saturday morning, the children had the pleasure of trying out different games in a workshop led by Béatrice Hess (honorary member of ELA). During this activity,Read More →...
For the first time, a boy receives a commercially available gene therapy for cerebral X-linked adrenoleukodystrophy (ALD) in the United States
On March 16th, 2023, after thirty years of research started in France with the support of ELA, the first boy in the world received the FDA approved gene therapy for the cerebral form of adrenoleukodystrophy. Following a positive newborn screening, 6-year-olds Conner Hess from New York was followed closely toRead More →...
Newborn screening of X-linked adrenoleukodystrophy (ALD) becomes part of program in the Netherlands
On April 18th, 2023, the State Secretary of the Ministry of Health, Welfare and Sport of the Netherlands decided to add the metabolic disease ALD to the newborn screening program to identify boys with adrenoleukodystrophy. Screening will start on October 1st, 2023. Most boys with adrenoleukodystrophy will develop severe damageRead More →...
ELA Families/Researchers meeting 2023 : videos available
ELA international repeats the ELA Families/Researchers meeting virtually, an event open to the international community of patients affected by leukodystrophy. A simultaneous translation in 5 languages (German, English, Spanish, French, Italian) allowed everyone to follow the presentations live. The videos of the meeting are available. You can review it now:Read More →...
A review meeting for the European program NG4Leuko
ELA International, partner of NG4Leuko’s program led by Vivi Heine, professor of neuroscience at the University of Amsterdam, organized a review meeting in Paris which brought together 5 teams of European researchers involved in the project. After a convivial diner organized in a typical Parisian brasserie on Thursday, researchers hadRead More →...
Ethics committee ELA International
Following the symposium organized by ELA International in September 2022 on “Therapeutic Innovation: what rules and access?”, ELA International decided to set up a research ethics committee. This committee brings together 11 experts in ethics, law, human sciences, representatives of ELA families, and scientists, to promote a collegial and multidisciplinaryRead More →...
ELA International warmly thanks Nathalie Cartier
Since its creation in 1992, ELA has forged special ties with Nathalie Cartier and has strongly supported her work. She participated in several events to support the actions of ELA and was a member of the Scientific Committee of ELA International from 2018 to 2022. At a time when geneRead More →...
