HRH The Princess of Asturias, Letizia Ortiz, signed today in the Golden Book of the City of Totana, a formal procedure that, as stated in the Rules of the City Honors and Awards can make life relevant characters public prestige and promote the name of this city and its inhabitants.
This event is produced in conjunction with the opening ceremony of the Sixth National Congress on Rare Diseases held during this weekend in Totana, organized by the Association D'Genes, Spanish Association of People Affected family and Spanish Federation AELIP and Disease Rare (ERDF).
The Princess of Asturias, President of the Community, Ramón Luis Valcárcel, and the Mayor of Totana, Isabel Maria Sanchez, inaugurated the Sixth National Congress on Rare Diseases and the first Latin American Meeting, attended by numerous authorities of public life, health , social and voluntary.
Over 400 participants, representing 60 associations of patients and medical researchers from 11 American and five European countries, are meeting today and tomorrow in this county to participate in this conference.
Moreover, in this framework, is also celebrated the first International Symposium Lipodystrophies, a disease on which researchers Murcia Virgin hospital and hospital Arrixaca Santiago de Compostela are world leaders in the search for a solution.
Upon receipt of the act, to open the doors of the conference hall, school also attended different schools in Totana, occupational center "José Moya Trilla" and Psychosocial Support Municipal Service Totana.
Institutional Appreciation
The Mayor of Totana, Isabel Maria Sanchez thanked the Princess of Asturias visit to Totana "to support this noble and generous initiative, which germinated in our town a few years ago and has been sustaining, with great commitment, for their associations and the whole society totanera, through its City Council. "
He said the "real pride" Totana posed to "join us in this official act" and stressed "the support and commitment" of the royal family, with patients, families, scientists, teachers and scholars of Rare Diseases.
On behalf of the citizens of Totana, thanked His Highness for his "invaluable contribution to this good cause, to this sensitive company very unknown to the whole society."
The councilor wished to stay all Totana is "nice", so that "the hours or days that you spend with us have the complacent satisfaction of proving the degree of hospitality and solidarity of our people, without doubt, the largest and most important values ​​they cherish our neighbors. "
In his speech, the Mayor of Totana said the municipality "has become, in recent years, thanks to the efforts of many people, in a national and international, in Uncommon Disease, as it did long ago with Hemophilia ".
At this time, the city of Totana has helped the development and promotion of the first concrete actions to protect the affected families, and has promoted initiatives needed for the circulation of this reality, he said.
Sanchez Ruiz added that "our institution, and the people of Totana always shown, and they will continue doing their great sensitivity and sympathy for the orphan and unknown causes".
For the mayor, "the more attuned and find harmony between administrations, associations of patients and families, researchers and media-awareness as essential to the whole of society, the better will be the result."
He advocated that the Congress "out useful conclusions that advance the quality of life of patients and their families" and he added that "we all have the common purpose that we must learn to understand, and understanding to help."
Also concluded by referring to one of the slogans of awareness of the association "D'Genes", recalling that "Rare diseases are not the people who have them."
