UB Chair on Rare Diseases
There are currently more than 6,000 types of rare diseases. Although these received this name because they are not common pathologies, if we put together all the diseases under this category, we see they affect between the 6% and 8% of the world population, and specifically in Spain, they affect more than 3 million people. The UB Chair on Rare Diseases, in collaboration with Pfizer, took place today. Its aim is to give visibility to research and to promote the dissemination and training in these pathologies.
There are currently more than 6,000 types of rare diseases. Although these received this name because they are not common pathologies, if we put together all the diseases under this category, we see they affect between the 6% and 8% of the world population, and specifically in Spain, they affect more than 3 million people. The UB Chair on Rare Diseases, in collaboration with Pfizer, took place today. Its aim is to give visibility to research and to promote the dissemination and training in these pathologies.
The main aim of the chair is to train students, researchers and professionals in all the fields related to rare diseases: genetic and clinical diagnosis, basic and translational research, as well as the knowledge transfer for citizens in order to improve the wellbeing of the patients.
“We want to involve all citizens, especially the patients, from the very first step, in the research of rare diseases”, notes the scientific director of the chair, Marisol Montolio, lecturer at the Faculty of Biology. “With a greater social knowledge of rare diseases, we can contribute to raising awareness among society, which will result in more research on this type of diseases, and consequently, in potential future treatments. It is essential to present the research on this type of diseases in order to provide society, and specially the affected people, with answers”, notes the researcher, also member of the European Reference Network for rare or low prevalence complex diseases, and scientific director of the Duchenne Parent Project Spain.
“We as a company —says Nuria Mir, medical director of Rare Diseases in Pfizer Spain—, have been working for more than thirty years to try and improve the daily lives of people with these rare diseases. Supporting science and knowledge are the tools we have for finding solutions to improve the quality of life of the patients. A commitment that makes more sense now than ever thanks to the collaboration with the UB”. She adds: “Today is a very special day for those who work on research on rare diseases. The creation of this Chair at the University of Barcelona is an important advance in the fight against these pathologies and the patients. Raising awareness on these diseases and giving visibility to the importance of research are part of the core idea of this project, a goal we share in Pfizer”.
Among the activities of this Chair, led by the lecturer and academic vice-dean of the Faculty of Biology Albert Martínez, are the organization of courses, for instance, as part of Els Juliols de la UB, and seminars; scientific sessions; calls for grants and awards; and several social outreach activities such as organizing conferences aimed at patients and family members, and society in general, in collaboration with organizations built by the affected people.