Portal de Totana

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The Mayor of Totana greets participants of the First Latin American Meeting on Rare Diseases (16/10/2013)

The Mayor of Totana, Isabel Maria Sanchez, has made an institutional reception on behalf of the Municipal Corporation, the participants of the First Latin American Meeting on Rare Diseases representing more than fifteen associations worldwide, eleven Latin American and four Europe, which have gathered this week in Totana.

The municipal councilor, accompanied by the president of the National Federation of Rare Diseases, Juan Carrion, and the president of the Association of Rare Diseases Totana "D'Genes", Naca Pérez de Tudela, thanked the participants in the meeting their assistance to it, thereby achieving that Totana again become an international leader in the fight for the improvement of life for people with rare diseases.

During the reception, the Mayor has highlighted the importance of Totana is becoming the world leader in the struggle of families for the evolution and development of rare diseases research, thanks to the efforts of the Association D'Genes, the AELIP Association, and for more than a year with the addition of Juan Carrion as president of Feder.

Also praised the work carried out by Juan Carrion and Perez Naca, as their ability to fight by joining associations in this case of Latin America and Europe, is leading to important agreements for those affected.

At the same time, thanked the associations concerned, "since you come where the government can not reach."

With this international meeting is to move forward with the signing of the Latin American Alliance for Rare Diseases "a pact that marked a before and after in your struggle to improve the quality of life for patients."

After the reception, the members of the Latin American delegation visited the headquarters of the association "D'Genes" Narrow street of Totana.

Finally, Sanchez Ruiz stated that thanks to the City, both attending the International Meeting of the National Congress as Rare Disease that begins Friday, will have the opportunity to visit the Oilfield Argárica of La Bastida, The Holy, The Alboleja Strait and the Castle of Aledo.

View report:

http://www.totana.com/cgi-bin/encuentro-iberoamericano-de-enfermedades-raras.asp

Source: Ayuntamiento de Totana

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