La actual junta directiva está formada por:
Tesorera: Ana García
Vocal: Antonio Cascales
Presidente: Gustavo Amorós
Vicepresidenta: Silvia Aguilera
Secretaria: Gema Giménez
Representantes en otras organizaciones:
Vocal de pacientes en SEMAIS: Gustavo Amorós
ERN ReCONNET / EURORDIS: Silvia Aguilera
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