Report on the First Ibero-American Congress on Rare Diseases held in Brazil
The First Ibero-American Congress on Rare Diseases (CIADR), organised by the Associação MariaVitoria (AMAVI) was held on 25 September 2013 in Brasília, Brazil.
This event co-organised by the Centro de Estudos Sociais da Universidade de Coimbra-Portugal (Centre for Social Studies, University of Coimbra, Portugal), and supported by the Ministry of Health, national and international institutions, Pharmaceutical Companies , the University of Brasília, and other institutions. This event was the first of its kind in Brazil with more than 1,500 participants from all sectors including academia, governmental, industry and patient associations. The focal topic at this conference was the need to create public policies for a population that can reach up to 16 million Brazilian citizens.
A working group meeting took place after the CIADR meeting on October 25 2013 to discuss the creation of policy of care to benefit rare diseases patients. This meeting was attended by 30 stakeholders from different sectors. The working group expressed a deep interest in creating policy that will help creating reference centres for rare diseases. The working group also highlighted the many activities in the area of rare diseases that are underway in Brazil. Additionally, the Minister of Health is already committed to the creation of the Technical Group for Rare Diseases, which was finalised during the event of World Rare Disease Day on 2 February 2012, in Brasilia. AMAVI, promises to seek the necessary actions in the future that will contribute to integration of Brazil in more advanced discussions on rare diseases.