Totana today marked the International Day of Rare Diseases (ER) with the reading of a manifesto by members of the Association "D'Genes" in this town and the realization of a chain of solidarity who led students in three classrooms fifth year of school "La Milagrosa" of this city.
The event took place in front of the Consistory totanero in the Plaza of the Constitution, under the theme "Getting a face of indifference" and served to sensitize the public and community socio-educational reality presented by the families and patients with rare.
It was conducted in the Mayor of Totana, Isabel Maria Sanchez, the CEO of ERDF in Murcia, Juan Carrion, president of the Association "D'Genes", Naca Perez de Tudela, and other members of the Municipal Corporation and officials of the association.
This initiative aims to draw attention of society on the importance of fighting against indifference that currently experienced by people with ER and to guarantee their rights and equal opportunities in life.
The declaration contains the momentum of the designation of centers, services and referral units to improve equity in access to diagnosis, treatment and health and social care of families, and ensure the effective care of all people with ER in each community autonomously.
In addition, claimed to improve access to treatments, therapies, orphan drugs and medical devices, and give a similar treatment to pensioners in relation to measures of the Spanish health copayment.
The mayor reported that the Region of Murcia is a pioneer in recent years in the implementation of a new partner-specific health to treat these diseases and development of information system, which provides updated data on the incidence of these diseases sex, age, area and conditions.
He recalled that the City of Totana was preparing a record of ER and patients and said that urgent action is necessary to develop passing through improving and developing a social model and holistic health and education and coordinated.
He also noted the continued commitment of the municipal administration, which has already given to the Autonomous Community land to build a referral center for research of ER when the available budget allows, and congratulated the Association D'Genes and by ERDF the dissemination and awareness works being made and which takes you where administrations are unable to do so.
Following the ceremony, the school held a chain of solidarity and shared the hearts of hope symbolizing the values of solidarity, equality and respect for life.
The ER, also called rare diseases or uncommon, represent a comprehensive set of diseases that are characterized by their low prevalence in the population (five cases per 10,000 population) and significantly reduce the life expectancy and quality of life.
It is estimated that between six and eight percent of the population is affected by a rare disease at some point in their lives, which implies the existence of some 85,000 cases in the Region.
View report:
http://www.totana.com/cgi-bin/dia-internacional-enfermedades-raras-12.asp
