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2016 will be the International Year of Rare Diseases Research and 2013 the Spanish Year for Rare Diseases

The Spanish Minister of Health announced it together with a strategy for a better understanding and diagnosis of rare diseases

November 29th 2013

Ana Mato, Spanish Minister of Health, Social Services and Equality

Ana Mato, the Spanish Minister of Health, Social Services and Equality, communicated recently that 2013 will be the Spanish Year for Rare Diseases. The announcement was made during her speech at the V National Congress of Rare Diseases in Totana (Murcia, Spain). This initiative wants to increase Spanish citizens’ knowledge about these pathologies and arouse the interest of researchers, practitioners and industry. Only in Spain, about three million people are affected by some of the 7,000 rare diseases. The Ministry wants to develop a strategy based on three working areas: health, science and society.

The Spanish Year for Rare Diseases means the Spanish adherence to the International Year of Rare Diseases Research, which will be celebrated in 2016. The minister explained that such initiatives taken by the Government want to address the challenge of rare diseases. Mato noted that the Ministry of Health, Social Services and Equality, works to provide individualized answers to every situation offering a multidisciplinary healthcare approach, which considers the needs of patients not only from a physical point of view, but also from the healthcare, psychological, economic and social fields.
 
The Ministry will develop a coordinated strategy based in three working areas:

  • Health: A Rare Diseases Strategy will be developed, which is currently under evaluation in coordination with the Autonomous Communities, to promote prevention and early detection, as well as improving health care and the application of advanced therapies.
  • Science: The research on rare diseases and the creation of working groups will be promoted.
  • Society: Aims to improve the knowledge about rare diseases through information and awareness campaigns aimed at the general public and also to the training of health professionals.

In addition, the Ministry will contribute to a better understanding and diagnosis by strengthening the processes of prevention and early detection and care in reference centers and fostering multidisciplinary research to develop new drugs. The Spanish Minister closed her speech addressing the children, who represent a high percentage of patients with rare diseases. She told them they are a priority her work every day.

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