Portal de Totana
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The event will go, among others, Juan Carrion, president of the Spanish Federation for Rare Diseases (FEDER) and Naca Eulalia Pérez de Tudela, President of the Association D'Genes and the Spanish Association Lipodystrophies (AELIP)
Tomorrow, March 4, 2014, at 1230 hours, the Spanish Federation for Rare Diseases (FEDER) Delegation of Murcia, DEGENES Association and AELIP Association will conduct a ceremony to mark the World Day for rare diseases in school La Milagrosa Totana.
The event will take place in the school yard with the presence of more than 750 students and he will perform the reading of the Declaration of Support for people with rare diseases.
The ceremony was attended by the Hon.
Minister of Education, Universities and Employment, Mr Pedro Antonio Sánchez López, the Hon.
Mayor of the City of Totana, María Isabel Sánchez Ruiz, the President of the Spanish Federation for Rare Diseases (FEDER), Juan Carrion Tudela, the President of the Association of rare diseases Dgenes and the Association of Family and affected Lipodystrophies AELIP, Mrs. Eulalia Pérez de Tudela Naca Canovas and the Director of the College of the Miraculous, Pilar Perez.
February 28.
World Rare Disease Day
Each year, the Spanish Federation for Rare Diseases (FEDER) held in coordination with the European Organisation for Rare Diseases (EURORDIS) an awareness campaign around World Rare Disease Day (28 February).
Specifically in Spain, the 2014 World Day aims to raise awareness of the importance of caring for our education to achieve true integration and inclusion from the first years of life.
Under the motto "Educate in Rare Diseases, a subject of all," the campaign aims to raise awareness on rare diseases and attract attention to situations of large inequities and injustices that families live.
Since 3 years, ERDF has reasserted this message in different campaigns.
In this way, and to get the message out further, coordinates and promotes ERDF in Spain Solidarity formed a network of associations, corporations, foundations, scientific societies and institutions that carry the message through numerous routes.
In total, more than 300 entities involved in our country at the World Rare Disease Day organized around more than 120 activities across Spain.
All this results in that February is the month in Spain for rare diseases.
A month where rare diseases are placed on the agenda of the media.
It is not just making noise transferring the problem, but seeks to propose alternatives to develop solutions.
Therefore, and in order to continue working to find those solutions, from ERDF year organized a Sensitization Campaign for World Rare Disease Day.
A campaign of all and for all that will bring together all the efforts of more than a decade of work in rare diseases.
A campaign that aims once again, be the epicenter of change for the future of people with rare diseases.
Source: FEDER. Foto: archivo Totana.com
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