Portal de Cartagena
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Citizens intend for the City of Cartagena to be involved and disseminate the first Regional Integral Plan for Rare Diseases of the Region of Murcia, recently approved by the Government Council, and to adhere and participate actively in all acts and actions during these days will take place in the Region of Murcia
The Municipal Group of Citizens in Cartagena has registered a motion that will be debated in the ordinary plenary session tomorrow to support the demands of the regional delegation of the Spanish Federation of Rare Diseases (FEDER) on the occasion of the World Day of Rare Diseases 2018 celebrates next February 28th.
The orange training has included in its proposal to urge 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.
On the other hand, Citizens intends for the City of Cartagena to be involved and disseminate the first Regional Integral Plan for Rare Diseases of the Region of Murcia, recently approved by the Government Council, and to adhere and participate actively in all acts and actions that during these days are going to take place in the Region of Murcia.
According to data offered by the Spanish Federation of Rare Diseases (FEDER), in Spain there are about 7000 rare diseases identified that affect 5 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, many family members will lose what little 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
Rare diseases are those that have a low incidence in the population.
To be considered rare, each specific disease can only affect less than 5 out of every 10,000 inhabitants.
The rare diseases affect a large number of people, since according to the World Health Organization (WHO), there are about 7,000 rare diseases that affect 7% of the world population.
In total, it is estimated that in Spain there are more than 3 million people with rare diseases.
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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