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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 →...


Scientific publication: Results of the study “impact of cALD on the daily lives of families”

With the mobilization of the families, health professionals and ELA, and under the lead of the firm ARGO Santé, a study on the impact of cerebral adrenoleukodystrophy on the quality of life of patients and their families was conducted on Leuconnect. The platform allowed the expected recruitment and a rapidRead More →...


3rd international congress on newborn screening for MLD

The 3rd MLD Alliance international congress on newborn screening for metachromatic leukodystrophy (MLD) was held in Florence on November 3rd and 4th 2022. It brought together some sixty clinicians, scientists, industry and patient association representatives. The 1st day, some specific workshops were organized. Scientists shared information about the ongoing newbornRead More →...


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