Guillaume has been involved in TSC since the birth and TSC diagnosis of of his daughter in 2005. He is involved as a volunteer in the French association of patients and families affected by TSC (ASTB). Since 2010, he has been a member of the board of directors. He took the place of president for 10 years, from 2014 to 2024. He develops mobilisation actions to cure TSC such as the publication of a white paper presenting the needs expressed by 400 patients and their caregivers, participation in the drafting of national guidelines for the diagnosis and care of TSC in France, the representation of patients with pharmaceutical laboratories and French and European health authorities for clinical trials and the drugs authorisations. He is a member of the TSC international Association (TSCi) and the European TSC association (E-TSC). 

Guillaume Beaure d’Augères lives in France. He is the father of three children and works for a French gorvernmental financial organisation. He studied physics and innovation, he is particularly interested in research. He participates in the international TOSCA program, which aims to create a database of 2,000 people with TSC. Since 2010, he has participated in all international conferences on TSC research. 

In 2024, Guillaume Beaure d’Augères joined the board of directors of ADAPEI 49 as a volunteer. This French association manages 40 reception facilities for people with neuropsychiatric disorders (specialised schools, adapted companies, residential homes). This structure allows 1,500 disabled people to find places to live, learn or work. 

He is currently president of the TSC Expert France association, whose objective is to promote the collaboration of patients and expert caregivers in TSC research programmes. He participated in defining the research priorities of the King Baudouin Foundation for TSC, this approach contributed to the creation of the TAND consortium.