The General Alliance of patients calling for greater specialization to patients with rare diseases.

February 28, day world of the disease rarely.

-these pathologies affect 250,000 people only in Spain

-the creation of services and reference units is a priority to improve the quality of life of those affected

-the presence of the associations of patients in the national health system is the key to publicize the needs of these groups

Madrid, February 2010.- the next Sunday, February 28 is celebrated the world day of rare diseases and from the General Alliance of patients (AGP) wants to to highlight the needs of this group which exceeds 250,000 patients in Spain and across Europe affecting more than 25 million.

According to the Vice-Chairman of the PGA, Alejandro Toledo, to improve the situation of these patients be encouraged centres, services and units of reference (South) specializing in this type of disease. The priority action must be to ensure a proper diagnosis, treatment and socio-health care, both patients and their relatives ”.

To ensure that these requirements are met, the AGP supports the participation of patients in the national health system. The quality of the health system is also measured by the degree of involvement are the patients therein, as well as the quality of the information they receive – says Toledo – must be taken into account patient organisations because they are structures consolidated with great experience and very high value in each pathology information ”.

From the Spanish Federation of rare diseases (ERDF) will be shown agreement: believe that the Administration should accommodate patients as full members in the Committee for designation of centres of reference of the Interterritorial Council. Thus, would ensure a democratic participation of patients in decisions that affect them ”, says Claudia Delgado, general director of ERDF.

Another aspect that defends itself from the AGP and ERDF is that focal points must have sufficient funding for its long-term economic sustainability, as well as to give coverage to the transfer of the patient to the same, reimbursed expenses, managing the residence or speeding up the obtaining of medication orphans or not authorized even in Spain ”pointing the Director general of ERDF.

The multidisciplinary approach is essential to meet the different changes that occur in the treatment of any disease, even more so in the rare diseases, must be included in the team to a social worker and a psychologist whose work of accompaniment and advice must be recognized in the personal care patients ”, explains Delgado.

The voice of the AGP as a space of representation for the associations of sick people is basic to achieve these objectives. According to ERDF the Alliance will push a label of clarity and transparency in associations of patients ”.

On the General Alliance of patients

The General Alliance of patients (AGP) encompasses entities and Spanish sanitary institutions in various fields. It has been created with the intention of promoting the dialogue of the organizations of patients with health administrations, professionals in the same area and private entities.

The main mission of the PGA is to provide patient organisations of mechanisms for participation in healthcare decisions. To this end, PGA seeks to facilitate dialogue between health professionals, public administrations, private health sector companies and organizations themselves of patients, sharing objectives, improvement opportunities and problems to solve.

PGA is constituted as a platform for dialogue around patients, using criteria of quality and transparency.