The association demands that the evaluation and updating of the Strategy against these diseases in the National Health System be made effective
Aerbeco calls for a European Action Plan in Benidorm in celebration of World Rare Disease Day
SS.MM Los Reyes de España square has hosted this noon the reading of a manifesto by Aerbeco, the Association of Rare Diseases of Benidorm and region, on the occasion of the celebration, on the 28th, of the World Day of Rare Diseases.
The event, which has brought together representatives of various associations and members of the municipal corporation, began with the words of the president of the association, Juan Miguel Martínez, applauding the gesture of the UN in recognizing these pathologies. "One more step at a global and European level, which we would like to see also take place throughout the Spanish territory," he said.
Julio Pavanetti, president of Liceo Poetico de Benidorm, has read the document, in which he has shown that "more than 300 million people around the world live with these diseases, three million in Spain."
For this reason, both the Spanish Federation of Rare Diseases (FEDER) and Aerbeco have set a series of challenges for the next decade that highlight the importance of equity in access to diagnosis, treatment and social and health care of quality.
These challenges are summarized in the implementation of comprehensive strategies in rare diseases, a registry of these pathologies, research, diagnosis, specialized training, treatment, coordination between the network of Centers, Services and Reference Units (CSUR) of the National Health System, comprehensive care models, social services and social inclusion.
Likewise, the manifesto points out that the action of each territory "is essential to achieve the specific challenges and global objectives." In this sense, both FEDER and Aerbeco have urged the competent institutions to "develop strategic actions and allocate the necessary resources".
To this end, they demand that Spain ensure "that the measures of the UN resolution are submitted to the Assembly of the World Health Organization." They also ask that "the presidency of Spain in the Council of the European Union commit to promoting a European Action Plan during its presidency in 2023 and that our country makes effective the evaluation and update of the Strategy for Rare Diseases of the National Health System ”.
Finally, it is also claimed that the autonomous communities "develop and promote comprehensive plans and policies on rare diseases aimed at guaranteeing equity in access to resources."
The mayor of Benidorm, Toni Pérez, has framed the demands of the association in the achievement of the Sustainable Development Goals (SDG) and has pointed out that "much remains to be done, especially in the field of health and well-being". Pérez has also highlighted the fact that the UN “has mandated States and regions to advance in the recognition of rare diseases”:
In his intervention, the mayor stated that “investments must be exercised. Not only applaud health workers and scientists but stay by them, recognize their task and order and implement regulations so that they can develop them by providing them with resources. That is the fight and the flag that must be taken”.
Finally, Pérez thanked the work carried out by Aerbeco in Benidorm for years "as an example of vindication and care for people suffering from rare diseases".