Rare and serious diseases that have little visibility


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)