As part of the celebration of World Day for Rare Diseases, held this year in Oviedo, FEDER wanted to give visibility and give prominence to patient associations of Oviedo in a significant meeting prior to the event with the presence of the Royal House. From AELMHU, represented by its board of directors, we wanted to offer our support accompanying all associations in this meeting.
The event brought together patients, families, institutions, representatives of the pharmaceutical industry and associations to raise awareness of the situation of people with rare diseases and to call for action to improve their quality of life and access to treatment.
The institutional welcome was given by Alfredo Canteli, Mayor of Oviedo, with a message of support and commitment, both for patients and their families, where he stressed the importance of the day to raise awareness in society about the reality of rare diseases.
Then, Andrés Mayor, representative of FEDER Asturias, and Mónica Oviedo, president of COCEMFE Asturias, gave their speeches, exposing the reality of rare diseases in the region and the challenges faced not only by patients, but also by the people who accompany them throughout the process, both diagnosis and treatment. Both highlighted the need to improve access to diagnosis and treatment, as well as the urgency of a more comprehensive approach to address the social, educational and occupational problems suffered by people with rare diseases.
One of the highlights of the event was the reading of the manifesto for World Rare Disease Day. This manifesto set out the main demands of the group, calling for action by public administrations to improve the quality of life of those affected. Among the most important demands was the urgent elaboration of an autonomic Strategy for Rare Diseases, with specific actions and funds aimed at improving the opportunities and living conditions of people with these pathologies.
In addition, the manifesto called for guaranteeing equal access to orphan drugs and speeding up disability assessment procedures, as well as promoting research into rare diseases, one of the keys to generating hope in a group that often sees how few solutions are available.
Juan Carrión, president of FEDER, was in charge of closing the event, highlighting the importance of collective effort and collaboration between associations, organizations and entities to improve the lives of affected people. Carrión gave a recognition to each entity of the rare disease associative movement in Asturias, as a symbol of the effort and dedication of all those involved in the fight for patients' rights.
The event also served as a reminder that, although rare diseases affect a small percentage of the population, their impact is profound and requires a forceful response from all actors in society.
The recognition of the entities of the associative movement was a key moment in the event, reflecting the gratitude and the importance of the daily work of all the organizations that fight to improve the quality of life of patients. The event was attended by 17 entities that actively work to raise awareness and improve the situation of people with rare diseases in Asturias, who daily face barriers both in access to health care and in the field of social integration.
