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 → ...
Families/Researchers meeting 2023, REGISTRATION IS OPEN
The next Families/Researchers meeting will take place online on April 15th and 16th 2023 afternoon (Paris time). With a simultaneous translation in 5 languages (German, English, Spanish, French, Italian) this meeting is open to the international community of patients concerned by leukodystrophy and once again gives the opportunity to gatherRead 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 → ...
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 → ...
