The joint work of Juan Carrión and Claudia Delgado from FEDER with Naca Pérez De Tudela from D´Genes, Elizabeth Zabalza from the Fundación Española de Beneficencia de Guatemala, and Javier Guerra from Mundo Marfan Latino, for creating a rapprochement between Ibero-American organizations of people affected, resulted in the First Ibero-American Meeting of Rare Diseases. The city of Totana (Murcia) hosted this event, from October 14 to 18, 2013.

 

They were days of knowledge of the reality of the pathologies represented in Europe and Latin America, of exchange of experiences and of manifestation of the need for union; the needs of the group of people with a rare disease in Latin America had to be conveyed together. As a result of the meeting, on October 18, 2013, we constituted the Ibero-American Alliance for Rare, Orphan or Uncommon Diseases (ALIBER), and our first Board of Directors was elected.

We are a network that brings together 532 organizations of patients with rare diseases , present in 16 Latin American countries, which coordinates actions to strengthen the associative movement, give visibility to the RES and represent people with rare diseases in Latin America before local organizations, regional, national and international, creating a space for joint and permanent collaboration to share knowledge, experiences and good practices in the social, health, educational and labor areas.

 

To be a reference as a coalition that integrates and empowers the different associations of patients with RES in Latin America, in favor of the defense of the rights of those affected and their families.

 

Our main values are: Commitment, Solidarity, Inclusion, Responsibility, Quality and Equity.