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HRH The Princess of Asturias inaugurated the VI Spanish Congress on Rare Diseases

The aim of the conference was again to raise awareness on the situation of people with rare diseases

October 29 2013

Doña Leticia at the Congress presentation

Rare diseases patients and their families met with leading Spanish experts last October 18, 19 and 20 in Totana (Murcia, Spain). The aim of the conference was again to raise awareness on the situation of people with rare diseases, within the VI Spanish Congress on Rare Diseases, organized by the Spanish Federation for Rare Diseases (FEDER) and the Association for Rare Diseases and other severe developmental disorders (D' Genes), in collaboration with Genzyme Foundation. HRH The Princess of Asturias inaugurated the meeting.

The event included interactive activities between patients and experts, like a table about patient’s personal experiences or another one entitled "Bringing the lab to the street", which covered topics such as the work of a molecular biologist , genetic and acquired lipodystrophy or orphan drugs. The Mutual Aid Group Hidden Roles (Papeles Escondidos) conducted a performance about the issue of the congress. In parallel to this meeting, the I Iberoamerican Meeting on Rare Diseases and the First Lipodystrophies International Symposium were held.

For further information: www.enfermedades-raras.org

The picture and the video were found at H.M. The King’s Household webside. More pictures at: www.casareal.es

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