The Association for Rare Diseases and Developmental Disorders of Totana "D'Genes" from September will be the delegation of the Region of Murcia of the Spanish Federation for Rare Diseases "ERDF".
To this end, members of the Board of the Association for Rare Diseases and Developmental Disorders of Totana "D" GENES ", held a few months ago a meeting with the board of the Spanish Federation for Rare Diseases ERDF to start Gene D'paperwork to lead the delegation of the federation Murcia, and processed the necessary documentation.
As reported from D'Genes, all procedures have been formalized and will materialize from September.
"This is a great challenge and an honor for this organization because it possible to be a clear reference to the regional level, and enable first-hand to help people who suffer directly from a rare disease in their families," said the president of the association, naca Pérez de Tudela.
Thus, a service will be consolidated guidance and information, coordinated with Federer, who is one of the most requested services by the family.
From September, D'Genes, representing the delegation of ERDF in Murcia, will join the existing Barcelona, Sevilla, Valencia, Madrid and Alicante.