Rare Disease Day: FEDER celebration event in Oviedo

The central event of Rare Disease Day took place on 4 March in Oviedo and  focused on ‘pERsonas’ (ER stands for Rare Diseases, RD), the slogan of the campaign that FEDER has launched this year to raise awareness of the reality of those who live with these pathologies.

Her Majesty the Queen presided over this event to celebrate Rare Disease Day, which is commemorated on 28 February.

FEDER has brought together the entire associative movement in this meeting with the aim of centralising the celebration in an event that will bring together patients, families, researchers and institutional representatives. In this context, the organisation wants to highlight the importance of placing the person at the epicentre of care and research into rare diseases, a key demand for progress in terms of equity and access to the necessary resources.

Ms Letizia, who has been accompanying the FEDER family for more than 15 years, reaffirmed her commitment to the rare disease community, sharing the progress made and the challenges that remain.

The event was attended by Mónica García, Minister of Health, Adrián Barbón, President of the Principality of Asturias, and Alfredo Canteli, Mayor of Oviedo, among other government representatives, to hear the reality of the more than 70,000 Asturians living with rare diseases or in search of a diagnosis.

Dr. Yadira Bravo, leader of JARDIN Work Package 2, was a guest at the event.

FEDER Rare Disease Day event.  Dr Yadira Bravo (left) was a guest at the event.

The ‘pERsonas’ campaign aims to give a face and a voice to those living with a rare disease, underlining the need for health, social and research policies to be people-centred. The initiative emphasises that, beyond numbers and diagnoses, there are life stories that deserve to be addressed with urgency and empathy.

• FEDER website