Colombia joined the global commemoration of the day of the orphan diseases.

-Participants enjoyed musical performances, workshops and specialized advice

-in Colombia there are approximately 800 thousand patients with rare diseases

Bogotá, February 2012.- with a day of concerts, theatre and workshops of integration, the Colombian Association of patients with diseases of deposit Lisosomal (Acopel) held on Sunday February 26 the world day of the orphan diseases, in the Park of the bride and groom.

With this event, under the motto together we are more ”, Acopel joined for the third consecutive year the hundreds of organizations from more than 40 countries of the world that, from 2008, they spend the last day of February to patients and their families.

The President of the Foundation, Luz Victoria Salazar, ensures that the objective of the activity is bring together all the actors involved and contribute to the visibility of these diseases ”. Explains that to treat rare ailments are unknown by the majority of the population, and forgotten by States and by those who make health policy ”.

Why organizers seek to with this type of activities the population and health institutions facets with those affected and will help them to solve their health problems.

Salazar also highlights the opportunity that patients get in touch with people who suffer from similar pathologies and receive emotional support. The diagnosis of one of these diseases can be devastating. So it is very important who are passing by that are known, feel that they are part of a group and know that although strangers feel there are other people in conditions similar to their ”, says.

The Memorial event have undo to artists such as Dinkol Arroyo, Susana Torres, Maleja and Tatán Mejía, and the musical group Los 50 of Joselito.

Also installed two modules of attention: one of the Office of the Ombudsman, which was provided to interested parties information about their rights, and another from the Department of genetics of the Universidad del Rosario, where specialists of this institution responded the concerns of participants on diseases.

Call for regulating law

Similarly, the day an emotional tribute was paid to patients who died in 2011 and insisted in the call to the national Government that it regulates the law of diseases orphan, existing since July 2010.

Rare diseases or orphan, as their name implies, are disorders that occur in a small percentage of the population and more than 80% have a genetic origin. In Europe are considered within this classification those diseases that affect one in every 200 thousand people; While in United States are included which do not exceed 200 thousand patients nationwide.

According to Salazar, in Colombia it is difficult to estimate the number of people who suffer from these conditions because there a high under-diagnosis of cases. In addition, although they are globally recognized between 5,000 and 8,000 rare diseases, still not there with an official list of the diseases included in this category. Salazar, however, estimates that they there are about 800 thousand patients with diseases of this kind, of whom about half are children.