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The director general of Persons with Disabilities of IMAS, Ana Guijarro, the Councillor for Social Services City of San Javier, Estíbaliz Masegosa and manager Fundamifp, Andrés Torquemada closed today V Training days in which the residence Fundamifp has put the focus on rare diseases.
Days that began with a keynote speech on the subject by the president of the Spanish Federation of rare diseases (ERDF), Juan Carrion ended with testimony from two local families who have faced an initial diagnosis that they sounded as rare as the disease suffered by their children.
Rafael Moreno Gomez, father of a child with Moebius syndrome, defended normal to the integration and equal rights for your child than any child.
Rafael Moreno and his partner started helping other families online and ended up creating the "RafaPuede-Rafael Moreno Vidal" Foundation which are getting great achievements in just over a year of operation.
Diana Carolina Mail, a young mother of a three year old girl suffering from the Marshall-Smith syndrome, which among other things involves severe breathing difficulties, narrated, excited, the mixture of bewilderment and hope that faced with his partner when they were told that their daughter suffered a "very rare" disease that only have 2 girls in Spain and 30 in the world.
Both the Councillor for Social Services, Estíbaliz Masegosa as the director general of People with Disabilities, Ana Guijarro highlighted the strength and courage of the family, and the value of associations, foundations and similar institutions "in which we have to support the administration because they are they know and live this situation closely and both deserve the full support of the Administration to create a network of more effective aid "Masegosa said.
Source: Ayuntamiento de San Javier
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