This year, the autumn Scientific Committee meeting took place in a conference hotel in the center of Paris on Monday, October 23rd, for the first time in 3 years. Members of committee were happy to be gathered again for a studious day that allowed the evaluation of all the applicationsRead More →
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 →
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 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 →
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 →
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 →
ELA International organized a virtual symposium on Saturday September 24, 2022 Therapeutic innovation: what ethical rules and what access? This event is a continuation of a first important event organized in last November on Clinical trials and Ethics. It brought together medical experts, industrialists, health agencies and families to exploreRead More →
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 →
ALD connect will be holding an Externally-Led Patient-Focused Drug Development meeting on Friday, July 22 to inform the Food and Drug Administration, about what it is like to live with ALD. The event will be open to the public online and free of charge. For more information:Read More →
Two new sites are open for the study on the quality of life of women with X-ALD on Leuconnect The study on the quality of life of women with X-ALD is now open in Spanish and Italian on Leuconnect. This study is an extension of the first study already availableRead More →
