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 →...
Symposium virtuel ELA International 2022 – To review the symposium
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 Families/Researchers meeting 2022 : 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 →...
ALD connect meeting on Friday, July 22
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 →...
