We accompanied FEDER to the celebration of its annual event on the occasion of World Rare Disease Day in Oviedo, an event of great importance that, under the presence of H.M. Queen Letizia, brought together all the agents involved and committed to the visibility and approach of rare diseases. This event was held for the first time in Asturias, the birthplace of H.M., which added a special touch to a day marked by emotion, reflection and social commitment.
PHOTO 0- PHOTO CAPTION: Isabel Motero, Director of FEDER, together with the Board of Directors of AELMHU and its Director.
The event, inaugurated by Alfredo Canteli, Mayor of Oviedo, began with welcoming remarks that highlighted the joint work between institutions and society to improve the quality of life of rare disease patients. He also stressed the urgent need to promote research and the development of new treatments, while recognizing the importance of social awareness and solidarity with those suffering from these diseases and, above all, with their families.
Throughout the event, we were able to listen to the testimonies of various protagonists, including Juan Carrión, president of FEDER and its Foundation. With a very personal and emotional speech, referring to his daughter Celia, Carrión shared the main challenges faced by rare disease patients and their families. He placed special emphasis on the slowness of diagnoses, which can take up to six years on average, and the difficulties faced by patients.
Carrión also stressed the need to improve access to genetic testing and the importance of personalized and precision medicine to offer more effective treatments. He also highlighted the scarce availability of drugs for rare diseases and the need to speed up access to them in Spain, as only 6% of rare diseases have an approved drug.
One of the most moving moments of the day was the testimony of Llara, a patient from Asturias who, thanks to her recent and innovative treatment, managed to partially recover her vision. Her story reminded us of the urgent need to continue promoting research into rare diseases, and how, thanks to scientific advances, many lives can be improved.
The event continued with important institutional interventions, such as that of Mónica García, Minister of Health, who reaffirmed the Government's commitment to improving healthcare for patients with rare diseases and stressed the importance of close cooperation between the different administrations, associations and society in general.
Adrián Barbón, President of the Government of the Principality of Asturias, also spoke to announce several significant initiatives, such as the creation of a Rare Disease Care Unit at the Central University Hospital of Asturias (HUCA) and the development of an Autonomic Plan for Rare Diseases. In addition, he committed his government to expand neonatal screening to detect rare diseases from birth.
The event reached its climax with the intervention of H.M. Queen Letizia, who, by way of closing, stressed the importance of speeding up access and funding times for treatments for rare pathologies. Queen Letizia expressed her solidarity with patients and their families, emphasizing that the voices of people with rare diseases must be heard and their demands must be translated into action. "The voices of people with rare diseases challenge us and their clamor must be translated into action," she stressed, calling for collaboration between all sectors to advance in improving the care and treatments available for these patients.
From AELMHU, we are deeply proud to have been part of this significant event. Yesterday's event not only served to raise awareness of the reality of rare diseases, but also reinforced the spirit of collaboration between institutions, associations, the pharmaceutical industry and civil society. This event has been a clear example that, when we work together, we can move forward in the search for solutions to improve the lives of people suffering from rare diseases.
