Queen Letizia attends World Rare Diseases Day event
On Thursday, Queen Letizia attended an event hosted by the Spanish Federation of Rare Diseases (FEDER) to mark World Rare Diseases Day in Santiago de Compostela. The event was organized within the framework of the organization’s campaign "Make time go our way", which exemplifies the pilgrimage against time that the families undertake until they managed to put a name to their disease.
In her speech, Queen Letizia remembered a little boy she met at the same event in 2022: “Marco had Schaaf-Yang syndrome and more than two months ago, his father Ricardo sent me an email to tell me that after five years of multiple medications, with severe intellectual disability, with a tracheostomy, with a feeding tube, but also with all the care possible and with all the love in the world, two months ago Marco died accompanied and surrounded by his mother, his father and his brothers. That day in León, Marco and I couldn't exchange a word, but he put his hand on mine, kissed me and looked at me, and that was enough.”
During the event, Queen Letizia also presented the FEDER 2023 Awards to EURORDIS, Orphanet, the Collective of entities and people with rare diseases and relatives of people with rare diseases and without diagnosis in Galicia, and SOMOS FEDER.
Queen Letizia wore a Roberto Verino (with thanks to letizia_de_princesa_a_reina & TrackingRoyal) with her Carolina Herrera pumps, her Gold & Roses earrings, and her Coreterno ring. When arriving at the event, she was wearing her & Other Stories coat.
