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 multidisciplinary work.
It will address ethical research issues for ELA such as:
- How to better involve patients in clinical research
- Facilitate access to treatments
- Accelerate new born screening of leukodystrophies
- Frame partnership of ELA International in research
Members of the committee will work on the elaboration of an ethical charter to affirm the values of ELA that the association will be able to bring to general public.