City officials participated today in the act of reading the Manifesto Memorial for the World Day of Lipodystrophies held at the gates of the City, and attended the College Student "La Milagrosa" and members of the Board of the Association of Relatives and Lipodystrophies Affected (AELIP).
The mayor, Isabel Maria Sanchez, and the councilors of Health and Social Care, Eulalia Sandoval and Jose Maria Sanchez, and the president of the Spanish Federation for Rare Diseases (ERDF), Juan Carrion, attended the ceremony held in the framework of program of activities organized by the March 31 World Day of Lipodystrophies.
Two mothers of affected children were read to manifest, which explained the characteristics of these pathologies are characterized by a loss of adipose tissue, and conducted a series of demands for improving the quality of life of people with lipodystrophy and their families.
Pathologies lipodystrophy are extremely rare, with a very low prevalence, which means they are difficult to diagnose properly and therefore adequately and efficiently treat.
In its manifesto, the relatives of affected call for the creation of reference units worldwide in comprehensive care to patients with lipodystrophy in each country and establish, in the case of Spain, to host Clinical Reference Units for Lipodystrophies the Department of Endocrinology and Nutrition, University Hospital of Santiago de Compostela.
Moreover, they claim that the lipodystrophy are considered social and health priority by different public and private institutions, the establishment of a map of experts and professionals in this disease globally and the consolidation of a patient registry.
It also has sued the establishment of concrete measures to ensure access to vital medicines for families with lipodystrophy, the momentum in research through the centers, services and reference units, measures to ensure the care of patients who require transfer to another state.
Similarly, requesting the use of the international classification system of Functioning, Disability and Health, which fosters education of students with special educational needs in mainstream schools, incorporating educational and healthcare jointly schools and hospitals.
It also seeks to ensure the inclusion of labor through flexible hours, adaptation of working conditions and job location.
I Route Solidarity by Lipodystrophies
As part of the activities planned to mark the World Day Lipodystrophies, this Sunday, April 14th, is celebrated from 10 to 12 hours, the I Path by Lipodystrophies Solidarity, solidarity bond which sets a price 3 euros for adults and 1 euro for children.
View report:
http://www.totana.com/cgi-bin/dia-mundial-de-las-lipodistrofias.asp
