Portal de Totana
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You have been informed of upcoming activities and projects of this organization, among which the IV Latin American Meeting on Rare Diseases, which will take place from 19 to 23 September in Montevideo
Her Majesty the Queen Letizia has received in audience a representation of the Latin American Alliance for Rare or rare diseases (Aliber), who chairs the totanero Juan Carrion Tudela, for upcoming activities and projects of this association, which groups a twenty patient organizations from 14 Latin American countries, among which is the Spanish Federation for Rare Diseases (FEDER).
Among those attending the ceremony were present on behalf of the Association of Rare Diseases D'Genes, Maria Dolores Montero, members of the board;
and vice president of the Association of Families and Affected Lipodystrophies (AELIP), Presentation Martinez.
The Latin American Alliance for Rare Diseases (Aliber) was founded in Totana in 2013 under the National Congress for Rare Diseases D'Genes organized by the association, with the aim of sharing good practices and help improve the situation of the 42 million people suffering from a rare disease in Latin America.
Aliber's goal is to share the inequality being experienced by people with rare diseases in Latin America and know their real problem.
The Alliance seeks to work together with other organizations and governments to advance the rights and improving the quality of life of families with ER.
Aliber and Rare Diseases Association Todos Unidos Uruguay (ATUERU) are organizing the IV Latin American Meeting on Rare Diseases to be held in Montevideo between the next 19 and 23 September.
During these days, the participants will discuss topics such as accessibility to treatment, early diagnosis, referral centers, the Latin American system of information and guidance, legislation and standardization in the area of ​​rare diseases, among others.
In addition, conferences on specific diseases, pulmonary hypertension, hereditary angioedema, haemophilia and Lysosomal Diseases will be held.
Juan Carrion, president of Aliber, thanked "the support that His Majesty paid as an ambassador for our cause" to the couple who wanted to "emphasize that their involvement goes beyond our borders, not only at national level".
This hearing has enabled representatives of Brazil, Portugal, Spain, Mexico, Uruguay and Venezuela can move Majesty Queen lines of action that is developing Aliber by a group that totals more than 42 million people in Latin America.
A group that is represented by a total of 497 associations from 14 different countries within the alliance.
After the last three editions of this meeting, held in Totana, Moita (Lisbon, Portugal) and Guadalajara (Mexico), Dr. Alfredo Toledo, President of the Organizing Committee of the Conference, discussed "the illusion that the whole country has to Aliber accommodate the family within the framework of the Fourth Meeting that will enable the establishment of a regulatory framework to unify the actions to implement the collective in Iberoamerica ".
An appointment that, as has materialized, "meet in its fourth edition representatives of Argentina, Brazil, Chile, Colombia, Ecuador, Spain, Guatemala, Mexico, Portugal, Uruguay or Venezuela, which will allow us to ensure the representativeness of the entire group and, at par, strengthen the lines of action of the alliance. "
Lines that are closely linked with the mission of Aliber, described by Juan Carrion as "the coordination of activities to promote the associative movement, visibility to the ER and representation of people who live with them throughout Latin America to local, regional , National and international".
A mission that, as specified Carrion, "leads to the creation of a joint and permanent space to share knowledge, experiences and best practices in social, health, educational and collaborative work areas."
Source: D´Genes
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