Danijela Szili has been active as a parent, and patient advocate since 2011. Being a pharmacist and having a multilingual background has helped her a great deal in her charity work. She has been the chairwoman of the Hungarian Rett Syndrome Foundation (https://rettszindroma.hu/) since 2011. Danijela was a member of the RSE board for 9 years. Her volunteer work for the DITA Task Force (https://www.eurordis.org/content/dita-task-force) provided her with the training and possibilities to participate and be involved in different areas of medicinal product development, regulation and access in Europe. She is a registered expert for Rett syndrome in the EMA (European Medicines Agency) list of European experts. She was involved in the protocol assistance procedure for the Sarizotan HCL clinical trial in 2015. She was one of the participants at the SAWP meeting at the EMA for this product. On her initiative, RSE decided to get more involved in research and formed a Research Subcommittee in 2019. This is now incorporated into the RSE Scientific Advisor Board.