On July 19, at the Guitar Museum of Almeria, took place the III Forum organized by the Foundation Poco Frecuente in which the main associations of rare diseases participated as main protagonists, along with public institutions involved in giving visibility and support to the Foundation, such as: the Territorial Delegate of Health and Families, D. Juan de la Cruz Belmonte; the President of the Andalusian Parliament, Ms. Marta Bosquet; the General Director of Disability of the Andalusian Regional Government, Ms. Mercedes López; the Second Vice-President of the Provincial Council of Almería, Ms. Ángeles Martínez; the Medical Director of the Torrecárdenas Hospital, Mr. Miguel Ángel García Espona; and the Councilor of the Presidency of the City Council of Almería, Ms. María Vázquez.
The story of the protagonists was fundamental to know how far a problem can go. For this reason, the III Forum of the Rare Foundation focused on the personal stories of the families so that all the agents involved could put themselves in the shoes of each person.
The General Manager of the Certification Division of OCA Global, Mr. David Lao, presented to the President of the Rare Foundation, Mr. Antonio M. Bañón, the Treasurer of the Rare Foundation, Ms. Mª del Mar Garcia Beltran, and the other public institutions mentioned above, the certificate of the quality management system based on ISO 9001:2015 for the scope of "Promotion of research in innovative therapies for rare diseases. Guidance to families with rare diseases. Organization of events, forums, activities and projects, especially in the educational field, for the visualization of rare diseases".
The President of the Andalusian Parliament, Ms. Marta Bosquet, closes the III Forum on Rare Diseases and highlights the work of the Foundation for its quality certificate and for the presentation of the epidemiological study, commenting that "it is a tremendous honor to be representing the Parliament of Andalusia today. This type of activity is very important to raise awareness in society because what is not seen, perhaps, is unknown and, consequently, there is little interest in trying to find solutions. In addition, the reasons are very important, such as the presentation of the epidemiological study to see the prevalence of the disease in the province, study the quality of life of patients and, above all, give visibility to the associations and the recognition of the work for certification.
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