Portal de Totana
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Members of the Association for Rare Diseases and Developmental Disorders of Totana "D" genes ", they initiate the procedures necessary to start writing a book that collects the various testimonies and experiences of relatives and people with a rare disease in the Region Murcia and the rest of the country.
Funds from this initiative, which is led by the president of D'Genes, Naca Pérez de Tudela, and activities coordinator, Juan Carrion, intended to be complementary to all activities organized by this organization to raise funds for the financing of services provided by it.
The implementation period established for this project is two years so that by 2010 it is expected that this book is on sale from all interested persons and coated with rare diseases.
This initiative will be coordinated and supervised by ERDF.
Currently, there is a similar initiative in which features D'Genes also intended to form part with the provision of testimony.
This project arises from the need to share with other people over this time have been approached by the association to show support and share the experience suffered by many families and people of Spain.
Similarly, this book is a testimonial meeting point of family and parents of children with rare diseases or severe developmental disorders and raising awareness of the public health problem posed by these diseases, "the rest of the population.
In turn, proponents of this initiative want to show their appreciation to all who have supported, collaborated and participated as volunteers in all activities organized by this association
Source: Ayuntamiento de Totana
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