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- "We are not used to our proposals being executed in such a short time, and even less so that they inform us of the state of their development, for that reason I want to thank all the Social Services team of the City Council for their work and attitude", he pointed out. Manuel Padín
- The orange training will continue to work for the Community and the relevant Ministries to implement actions of an autonomous and national nature with the ultimate goal of promoting and promoting a National Genomic Medicine Plan to improve the approach to rare diseases
The Department of Social Services of the City of Cartagena has confirmed to the Municipal Group of Citizens in Cartagena that is already developing the plenary agreement promoted by Cs in the February plenary to support, disseminate and promote the application of the I Comprehensive Law of Rare Diseases ( ER) of the Region in Cartagena.
From Social Services has been indicated to orange training that will take advantage of all municipal instruments of internal and external communication to inform the public of the regional plan.
This department has also clarified that in addition to the task of disclosure, they will contribute as their responsibility to the fulfillment of the objectives contained in the Strategic Line N ° 7 of the Plan referred to Social Services and that are within the scope of competence of the Local Entities.
The local spokesman for Citizens, Manuel Padín, explained that this strategic line refers to the necessary strengthening of access for those affected by rare diseases to primary care social services in terms of information, guidance and advice. "According to Manuel Padín , "This is where we will work to identify the resources related to RD, equalize the allocation of the centers of the Autonomous Community, and improve the dissemination of this knowledge to primary care professionals to expand or better adapt the offer to the user and their families ".
Manuel Padín has expressed his surprise at the attention received to his motion, "we are not accustomed to our proposals, and even less to inform us of the state of their development, so I want to thank the entire Social Services team of the City Council their work and attitude ".
National Plan of Genomic Medicine
The orange training will continue to work for the Community and the relevant Ministries to implement actions of an autonomous and national nature with the ultimate goal of promoting and promoting a National Genomic Medicine Plan to improve the approach to rare diseases.
According to data offered by FEDER, in Spain there are about 7000 rare diseases identified that affect 5 out of every 10,000 people in our country.
The majority of those affected by these diseases are young.
According to the spokesman for Citizens in Cartagena, Manuel Padín, "although we know that finding a cure for many of these cases is difficult, if we stop investigating, family members will lose the only thing they have now, hope."
In this sense, Manuel Padín, recalled that "according to the federation, of the 7,000 rare diseases identified, only 10 percent are being investigated in an active and professional way, everything we can do from the City Council to make this problem a bit more visible , promote research, early detection of warning signs or favor the social inclusion of children will be welcome. "
FEDER data
In the Region, it is estimated that there are more than 85,000 people suffering from any of these ailments, according to the Information System of Rare Diseases of the Region of Murcia (SIER-RM).
Source: Ciudadanos Cartagena
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