Portal de Mazarron
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Mr. Gaspar Miras Lorente, Mayor-President of the City Council of Mazarrón, in accordance with the provisions of the Regulation of Organization, Operation and Legal Regime of Local Entities, submits the following for consideration by the Plenary:
Adhesion to the manifesto for World Rare Disease Day
STATEMENT OF MOTIVES
Today we want to take stock of everything that has been achieved, but with our eyes on the future, in our hope, with the pillars that have brought us here: research, social transformation and direct attention through services.
And it is on these pillars that we make the following claims:
Increase scientific interest
Our challenge is to involve all the agents and multiply the involvement of society so that the projects of the associative fabric are duplicated through a collaborative financing model, but also consolidate the internal networks between research centers and enhance research by pathology groups .
Expand information and knowledge
Our challenge now focuses on legitimizing the role of patients in the research process.
Achieving it is a work of all the agents involved, focusing on the need to increase the knowledge of those groups with rare diseases that are more vulnerable and without diagnosis.
That is why we also need to boost genomic and precision medicine, as well as recognize the specialty of clinical genetics for the improvement of diagnosis and treatment.
Ensure the sustainability of the research
Our challenge depends on the establishment of an incentive system that places research into rare diseases as a priority patronage activity, as well as increasing investment in R + D + I.
In parallel, we must generate a collaborative financing model, as well as optimize existing resources.
Achieve a system adapted to rare diseases
To achieve the Sustainable Development Goal linked to universal health coverage, it is necessary to achieve equity in the diagnosis, treatment and care of all rare diseases, regardless of the country in which patients live.
We must also look inside the door because, although today even today 40% of people with rare diseases are not satisfied with the health care received and more than 20% had to move to another autonomous community to receive diagnosis and treatment.
Guarantee networking
Our challenge is to ensure that knowledge travels to all hospitals in our country, regardless of their participation in these networks.
Achieving it depends largely on updating the designation process of our Reference Centers.
Share information and classify it better
Our challenge is to obtain the support and resources provided to obtain sources that expedite the expansion of the 15 diseases that the registry already has.
In addition, another of our challenges would be to extend assistance to families beyond the patient's age of majority.
Guarantee specialized services
It is essential to have the support of the national and regional public administration to guarantee the continuity of the services provided from the associative movement that, otherwise, families could not access.
Guarantee the integral attention
Our challenge is to open the approval of the centers of the associative fabric by the administration and open the entrance door of these resources to this European network that is already underway and of which 7 countries are part.
Ensure a person-centered model of care
Our challenge is to apply the new disability scales and unify this process with that of independence, generating a social benefits model that addresses and responds to the needs of the person and not of the disease
Ensure a fully inclusive education
Ensure that any child, regardless of educational needs, has the same opportunities for personal and professional development.
Signed
D. Gaspar Miras Lorente
Mayor-President
Source: Ayuntamiento de Mazarrón
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