Palabras de Su Majestad la Reina en el acto con motivo del “Día Mundial de las Enfermedades Raras”

Link to the news article: https://www.casareal.es/ES/Actividade... Her Majesty the Queen presided over the main event of "World Rare Disease Day," an event that put "people" at the center, the motto of the campaign launched this year by FEDER to raise awareness of the reality of those living with these conditions. Although World Rare Disease Day is commemorated on February 28, FEDER convened the entire association movement to centralize the celebration in a single event that brought together patients, families, researchers, and institutional representatives. In this context, the organization aims to highlight the importance of placing the individual at the heart of care and research into rare diseases, a key demand for advancing equity and access to the necessary resources. Queen Letizia, who has been supporting the FEDER family for over 15 years, was present at this event to reaffirm her commitment to the rare disease community, sharing the progress achieved and the challenges that remain. The event also included the participation of Mónica Rodríguez, Minister of Health; Adrián Barbón, President of the Principality of Asturias; and Alfredo Canteli, Mayor of Oviedo, among other authorities, to hear the realities of the more than 70,000 Asturians living with rare diseases or seeking a diagnosis. The ‘pERsonas’ campaign aims to give a face and voice to those living with a rare disease, underscoring the need for health, social, and research policies to be people-centered. The initiative emphasizes that, beyond the statistics and diagnoses, there are life stories that deserve to be addressed with urgency and empathy. In Europe, more than 6,000 rare diseases have been identified, affecting 30 million people, 3 million of whom live in Spain alone. However, the low prevalence of each of these conditions, coupled with the lack of awareness surrounding them, leads to delays in diagnosis and limitations in access to treatment. Given this reality, FEDER (Spanish Federation of Rare Diseases) emphasizes the need to promote research, improve care coordination, and ensure that everyone receives the care they need. This event in Oviedo will be an opportunity to reflect on these challenges and continue making progress toward building a more inclusive and equitable society for people with rare diseases.