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
Created in 2005 by the Generalitat de Catalunya (Government of Catalonia) and University of Barcelona, IRB Barcelona is a Severo Ochoa Centre of Excellence, a seal that was awarded in 2011. The institute is devoted to conducting research of excellence in biomedicine and to transferring results to clinical practice, thus improving people’s quality of life, while simultaneously promoting the training of outstanding researchers, technology transfer, and public communication of science. Its 27 laboratories and eight core facilities address basic questions in biology and are orientated to diseases such as cancer, metastasis, Alzheimer’s, diabetes, and rare conditions. IRB Barcelona is an international centre that hosts 400 employees and more than 30 nationalities. It is located in the Barcelona Science Park. IRB Barcelona is a CERCA center, and a member of the Barcelona Institute of Science and Technology (BIST).