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Juan Carrion, President of the Spanish Federation for Rare Diseases (FEDER) held a meeting with José Ballesta, Mayor of Murcia, and the Chief of Sports and Health, Councilman Felipe Coello.
At this meeting, the totanero Juan Carrion said the current situation facing the more than 85,000 people living with rare enfermedads in the region.
Also, Carrion stressed the need for an infrastructure that enables the delegation of Murcia to carry out their work on behalf of the group.
Juan Carrion, President of the Spanish Federation of Rare Diseases (FEDER) held a meeting with José Ballesta, Mayor of Murcia, and the Chief of Sports and Health, Councilman Felipe Coello, in order to transfer you the current situation faced by the most 85,000 people living with rare diseases in the region.
In this meeting, Juan Carrion totanero political representatives moved to the main demands of the collective on health, advocacy and equality.
Priorities are set forth in the Decalogue that the Federation established as a roadmap for this 2015.
"To carry out these and other priorities to improve the quality of life of the collective need to have infrastructure that allows us to advance our journey towards a more just and equitable society," said Carrion.
Thus, he shared a crossbow and Coello strong need that the delegation of ERDF in Murcia has to have a facility to improve the work of the organization with 294 associations, 13 of which are located in the region of Murcia .
The President also thanked the ERDF commitment to rare diseases of the Mayor and the Councillor of Sports and Health.
"We thank the city of Murcia your listening and commitment to rare diseases, gradually get advance on the path with the support of all parties involved," said Carrion.
For its part, he undertook to study Ballesta Rafael Gómez, Councillor Heritage, finding a suitable place for the delegation of ERDF Murcia to perform work for the collective.
Source: FEDER
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