Eva Schoeters is the director of RaDiOrg, Rare Diseases Belgium. Her involvement in rare diseases originates from the diagnosis of her son, Pepijn (°2008) with Tuberous Sclerosis Complex. Eva lead the way to the establishment of the Belgian association for this disease, be-TSC, in 2015. She became co-chair of TSCi (TSC international) in August 2018. She was, however, trained as an art historian and worked in the field of preservation of historical monuments for many years. Her work for Tuberous Sclerosis Complex lead to a commitment to advocacy for rare diseases in general. After working on the sidelines as a volunteer in the Belgian rare disease organisation, RaDiOrg, she became president in March 2018 and consecutively stepped out of this role to become general coordinator and then director. It has become a mission to contribute actively to creating greater awareness and better care for all living with a rare disease, whether it be TSC or another one of the more than 6000 defined rare diseases.