On the morning of Tuesday, March 15, 2022, Her Majesty Queen Letizia of Spain opened the 2022 Rare Diseases World Day event held at the Auditorio Ciudad de Leon in Leon, Spain. The event is organized by the Federación Española de Enfermedades Raras (FEDER).
The theme of this year’s event is, How do you see yourself in 2030? which focuses on “…ensuring equal access to social and health resources, coinciding with a future European Action Plan on Rare Diseases…” according to the Spanish royal court.
During today’s event, Her Majesty gave a speech stating:
“…at the end of the day, and behind the figures, the obstacles, the difficulties, what remains is the value of a person’s life. Of that person, who on many occasions (because a very high percentage of those who suffer from rare diseases are children) is a small person, and who looks at us (a mother, a father, a grandmother). They look at us sometimes tiredly or unconcernedly or with questions that crowd in his throat. Those of you who live with a rare disease know what I’m talking about. And that’s what FEDER is for, for answers, for help, for information, for relief, albeit momentary, for consolation at times. To reach out. And accompany. For administrations and institutions to commit. To push in the same direction, which is the value that a person’s life has, every day…”