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It is estimated that around 400,000 people in Catalonia have a rare disease. In Spain this figure reaches 3 million and in Europe 30 million. In spite of the number of people affected, rare diseases have little visibility. Although promising breakthroughs have been made, these diseases are usually chronic, weakening, and multisystem disorders.
The programme “El Balcó” broadcasted by the radio station Cadena Ser devoted its section called "L'estat de las coses" to rare diseases. They invited Francesc Palau, paediatrician at Sant Joan de Déu Hospital, Isabel Gemio, president of the Fundación Isabel Gemio, and Joan J. Guinovart, group leader at IRB Barcelona.
"The solution, the cure, will only come about from research. We all have to recognise that," says Guinovart, who studies Lafora disease. "Families, and patients’ associations must join efforts to raise more money and encourage the research community to address the diseases that are affecting them".
Link to the programme: El Balcó, Cadena Ser (30 minutes. Catalan/Spanish)
About IRB Barcelona
The Institute for Research in Biomedicine (IRB Barcelona) pursues a society free of disease. To this end, it conducts multidisciplinary research of excellence to cure cancer and other diseases linked to ageing. It establishes technology transfer agreements with the pharmaceutical industry and major hospitals to bring research results closer to society, and organises a range of science outreach activities to engage the public in an open dialogue. IRB Barcelona is an international centre that hosts 400 researchers and more than 30 nationalities. Recognised as a Severo Ochoa Centre of Excellence since 2011, IRB Barcelona is a CERCA centre and member of the Barcelona Institute of Science and Technology (BIST).
