Anne-Sophie Lapointe has been directly affected by rare diseases, two of her children suffering from a lysosomal disease. For 15 years, she sat on the boards of national and European rare disease associations. She was appointed member of the INSERM ethics committee for nearly 6 years. She has a PhD and two Master's degrees in health ethics and economics. She worked as a project manager for the AnDDI-Rares rare diseases health network and was able to build, with Orphanet, axis 4 of the National Plan for Rare Diseases 3 on information, training and e-health. Since 2018, she has been part of the Ministry of Health in the rare diseases mission. She has been in charge of the project since 2021, coordinating the 55 actions arising from the PNMR3 launched in 2018. In this capacity, she sits on the European Commission's board of Member States for the European reference network for rare diseases and coordinates WP8 data management with the Netherlands for the joint action funded by the EU4HEALTH programme.