Portal de Cartagena
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On the occasion of the World Day of Rare Diseases, the Spanish Federation of Rare Diseases (ERDF) prepared a manifesto, with the aim of raising awareness and giving visibility to the reality of people living with rare diseases, which the president of the Asociación D'genes, Mari Ángeles Díaz Lozano, read this morning at the Consistorial Palace of Cartagena.
In the act, the deputy mayor, Manuel Padín, explained that in the last plenary session an institutional declaration was approved in support of these associations, and he has expressed support from the area of ​​Health that he directs, from the Department of Social Services and from the entire Municipal Government, towards associations that fight to improve the quality and life expectancy of those affected by rare diseases and their environment.
Padín showed his gratitude "for your determination, and you know that you have us to support you in all that you need".
The president of the Association D'genes, Mari Ángeles Díaz Lozano, thanked the City Council for the support given since "it is a joy that the City Council beyond the different political groups goes hand in hand to support people with a minority disease" .
The president explained that the manifesto is based on a series of fundamental pillars: research, social transformation and direct attention through services.
"What is not visible does not exist, so today we put face to those thousands of Murcia and people throughout Spain and around the world who live every day with a rare disease," were the words of the president of D´ Genes that then read the manifesto:
MANIFESTO FOR THE DAY OF RARE DISEASES
The manifesto first asks that scientific interest be increased by promoting research on this type of pathology and presents the challenge of multiplying the involvement of society through a collaborative financing model.
Second, he wants to expand the information and knowledge about those most vulnerable diseases that are not yet diagnosed.
Another of the requests is to be able to guarantee the sustainability of the research, increasing the investment of R + D + i (Research, development and innovation) and through the optimization of existing resources.
They also seek to achieve a system adapted to rare diseases regardless of the country in which patients live.
The president of D´genes explained that "today 40% of people with rare diseases are not satisfied with the health care received, and more than 20% had to move to another community to receive diagnosis and treatment."
Through the manifesto, it is requested to guarantee networking, so that knowledge travels to all hospitals in our country.
Share information and classify it better, as well as expand aid to families.
Ensure specialized services, comprehensive care and that there is a model of care focused on the person.
Finally, they ask for an inclusive education, so that any child has the same opportunities for personal and professional development.
Mari Ángeles Díaz, concluded the manifesto affirming that "we hope that these ten requests from the Association will be reflected during this year 2020".
Source: Ayuntamiento de Cartagena
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