Eurordis - Rare Disease Europe

Spain’s government declares 2013 the Spanish Year of Rare Diseases

The Spanish Minister of Health, Social Services and Equality, Ana Mato, declared 2013 the Spanish Year for Rare Diseases at the Fifth National Rare Disease Congress organised by the Spanish Rare Diseases Alliance (FEDER) and D’ Genes Association, at the end of October in Totana, Murcia in Spain.

The objective of this initiative is to raise awareness of rare diseases and to make them more visible to society, as well as to stir the interest of new researchers, health professionals and the industry in order to continue developing treatments and advancing the knowledge of these diseases.

At the meeting, the Minister spoke about her commitment to develop a coordinated strategy to tackle rare diseases with a multidisciplinary approach that includes health, social and scientific perspectives. The National Strategy will be implemented, together with the Autonomous Communities, to promote prevention and early detection of rare diseases, as well as improving health care and the use of advanced therapies.

There will be information and awareness campaigns designed to improve the knowledge of rare diseases both for the general public and for health professionals. Research on rare diseases, along with the expert networks, will be promoted.

The Prime Minister of Spain, Mariano Rajoy is expected to attend certain events to promote the Year of Rare Diseases in Spain.  FEDER will be an integral part of the preparations. Rosa Sanchez de Vega, Board member of FEDER and EURORDIS says, “We are already gearing up for a busy, exciting and eventful year!”

 “We are thankful to Spain for taking the lead in Europe in promoting the awareness on rare diseases and its recognition as a top public health, social and research priority at country level. We hope the Spanish initiative will inspire other EU Member States to declare national Years for Rare Diseases, while they are developing their national plans or strategies. Building on the success of the Rare Diseases Day and with the support of these more advanced Member States, EURORDIS will seek the support of the EU institutions to declare a European Year for Rare Diseases, which we would like to see happening before 2020,”says Yann Le Cam, Chief Executive Officer of EURORDIS and Vice President of the EUCERD.