Evanina has served as General Manager of DEBRA Spain (Butterfly Children Charity), the main national organization for people living with EB, since 2004. Strengthening communication between people living with EB and professionals, improving health-care provision, raising awareness, doing lobby and fostering international collaboration, are central aspects of her role.

DEBRA Spain has played a key role in the establishment and consolidation of EB reference units in Madrid and Barcelona (CSUR) and in developing social and health projects that support families with EB. As head of this patient advocacy group that has a team of 50 people, she has collaborated for more than 20 years with researchers and clinicians. She has contributed to organizing multidisciplinary conferences, disseminating scientific results, and supporting fundraising strategies to fund EB care and research. DEBRA Spain was also the founder of the network DEBRA Europe which then grew into DEBRA International. Evanina is on the Board of DI and plays an active role in creating synergies between DEBRAS and all stakeholders involved in EB.

For more information, DEBRA Spain’s history and work are summarized in a video available at https://pieldemariposa.es/nuestra-historia/"