Before this happens solidarity, President of the Spanish Association of Patients with glycogenosis, the Delegate of ERDF in Murcia, Juan Carrion Tudela, and Dr. Encarna Guillén, director of the department of Genetics, Hospital Virgen de la Arrixaca, held a rally report that showed the reality of Pompe disease, which is the main argument on which the film focuses "Extraordinary Measures."
Juan Carrión said how important it is that a film of visibility to the needs faced by affected by a rare disease, likewise applauded the projection of these films, because the general public closer to a reality that is present in the lives of those affected by any of the 7000 rare diseases known today.
Dr. Guillen placed the work that is being developed in our region with the group of people affected by rare diseases, said that several cases and different types of glycogenosis in the Region of Murcia and was grateful to be able to have the Spanish Association glycogenosis.
For his part, thanked Antonio Bañón ERDF co-organizing this pass solidarity, explained what Pompe disease and highlighted the needs and problems caused by this disease.
