Bine Haase

Bine HAASE is a passionate advocate for individuals living with facioscapulohumeral muscular dystrophy (FSHD), a neuromuscular disease she inherited from her mother. Born in 1978, Bine has been actively involved in the FSHD community for many years. Since 2015, she has served on the board of the FSHD group within the DGM e.V. (Deutsche Gesellschaft für Muskelkranke – German Society for Muscle Diseases). Her commitment to the cause extends to the European level, where she has been a board member of FSHD Europe since 2016. Furthermore, Bine represents the patient perspective at prominent organizations, including EURORDIS (Rare Diseases Europe), EUPATI (European Patients’ Academy on Therapeutic Innovation), and the EMA (European Medicines Agency), ensuring that the voices of those affected by FSHD are heard in crucial discussions about research, treatment, and policy.