la Comunidad de Madrid receives an award for the development of the Guide to rare diseases

flowers picked up the award granted by the ERDF at the hands of HRH the Princess Letizia

-patients with these diseases may know that hospitals have more experience in diagnosing and treating

-de La Comunidad de Madrid boasts more than 30 research groups in the area genetic diseases

Madrid, March 2012.- Vice-Counsellor healthcare, Patricia flowers received from the hands of HRH the Princess of Asturias, an award for the development of the first guide of rare diseases of the community of Madrid awarded by the Spanish Federation for rare diseases (ERDF).

Through this guide, which can be accessed through the Portal of health of the community of Madrid www.madrid.org/enfermedadespocofrecuentes , both as affected professionals will know the location of those hospitals with greater experience in each of these pathologies so exceptional.

This rare diseases web offers general information to citizens on 15 diseases were selected by the Federation for rare diseases. From this page, you can access via a link to the Association or of the Federation itself, where patients and their families can contact those people that better guide you in the search for information and assistance.

In the community of Madrid, thanks to the free choice, patients can choose the Center where his pathology is best known by practitioners for greater concentration of cases – casuistry – and therefore greater involvement and experience. On the other hand, due to the high specialization of the Madrid public hospitals, they treat many patients from other autonomous communities. Today the community of Madrid has 35 groups of diagnoses of rare diseases and the peace, October 12 hospitals, Ramón and Cajal, Gregorio Marañón, Puerta de Hierro, and Clínico San Carlos try to groups of these pathologies.

Space in continuous review

The Ministry of health aims to create a dynamic space, in continuous revision, where it is recorded graphically with easy access for citizens and professionals, the information concerning the activity in different hospitals of the Madrid service health and all developments with regard to these rare diseases.

The development of this guide has been the result of the collaboration of the different Directorates-General of the SERMAS, attention to the patient, hospital and information systems with the Spanish Federation for rare diseases, and arises as a response to the demand for the creation of a map of health resources to serve as guidance to professionals and patients.

Research in Madrid hospitals

Madrid hospitals, in addition to his medical work, have a high level research in these diseases. Thus the community of Madrid has more than 30 research groups in the area of genetic disorders, which means that there are more than 100 active research projects.

Rare diseases have one prevalence of less than 5 cases per 10,000 inhabitants, lack of effective treatments, the causes are unknown, and there are few epidemiological data. Currently, the number of known rare diseases is estimated at 8,000.