Portal de Totana
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The Association of Rare Diseases D'Genes fulfilled last January 25, ten years.
To celebrate this day, an afternoon of activities was organized in the Plaza de la Balsa Vieja de Totana.
In addition to installing an inflatable for the little ones, there was the presence of solidarity dolls from well-known animation characters with whom the attendees could photograph themselves.
The highlight of the celebration consisted of a balloon release while listening to the song of "Happy Birthday" in tribute to D'Genes.
The president of the association, Juan Carrión Tudela, had words of appreciation for all those who form the D'Genes family and wanted to thank all the people who throughout these years have supported the cause of rare diseases by contributing to growth of the association and to continue with the objective of improving the quality of life of those affected by rare diseases.
The event also brought together the mayor of Totana, Andrés García Cánovas, and other members of the municipal Corporation, who thus accompanied the celebration of the first decade of existence of this association, which in these ten years of life has worked to improve the quality of life of the people who coexist with infrequent pathologies and above all also to give visibility to the reality of this group.
From D'Genes we want to thank the collaboration of the Peña Barcelonista de Totana and the animation company Animunis so that this afternoon of celebration has been a reality.
In addition, we want to thank Juan Manuel Martínez Casanova, who made available the music equipment to liven up the event, the students of 4th of ESO from the school "La Milagrosa" who took charge of the solidarity dolls and Loli Ros and Fina López for the delicious sponge cake that they prepared and that served to blow the candles of this tenth birthday.
The Association of Rare Diseases D'Genes was born, under the presidency of Naca Eulalia Perez de Tudela, on January 25, 2008, being declared a Public Utility Entity in June 2012. In 2013 the entity was organizer and founder of the Latin American Alliance of Rare Diseases, ALIBER, hosting the First Ibero-American Meeting.
In addition, organizes each year the International Congress of Rare Diseases, which brings together hundreds of people between affected by rare diseases and family, representatives of the Administration and professionals from areas such as health, social work or education.
During these years, D'Genes has worked to provide support and care for those affected by low-frequency diseases and their families, raise awareness about the reality of rare diseases, fight to strengthen research and encourage coordination between affected, administration and professionals.
Source: D'Genes / Totana.com
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