IBEC has signed a collaboration agreement with the Federación Española de Enfermedades Raras (FEDER), a non-profit organization that represents the three million people suffering from rare diseases throughout the country.
Rare diseases are those that affect fewer than 5 out of every 10,000 inhabitants. According to the WHO, there are about 7,000 such diseases affecting 7% of the world’s population, so altogether they affect a huge number of people – and they can appear at any stage of life. The agreement with IBEC will connect the institute with patients’ associations to develop projects together that have a direct application according to the needs of sufferers.
FEDER brings together more than 330 associations representing over 1500 distinct diseases, as well as helping represent the interests, defend the rights and promote the full social inclusion of the rare diseases community in Spain. The two organizations will also participate in and promote each other’s relevant events and initiatives, and help raise awareness about rare diseases and the research that’s focused on finding new solutions for them.
At IBEC, these include muscular dystrophy (Javier Ramon’s group); prionopathies such as Creutzfeldt-Jakob Disease (José Antonio del Rio); congenital nephrotic syndrome (Nuria Montserrat); cystic fibrosis (Eduard Torrents); Sickle Cell Anemia (Josep Samitier, with Hospital Clinic); Osteochondritis Dissecans (Elisabeth Engel); Dent disease (Elena Martínez); pulmonary hypertension (Daniel Navajas); and PKU (Samuel Sanchez).
“With this new agreement, we hope that FEDER can help us accelerate our ongoing research into these diseases,” says David Badia, Managing Director of IBEC. “Our close association will also offer a broader reach and new possibilities for raising awareness about the many different pathologies and the patients that are affected.”