12 Jul

Ciberer’s Patients advisory council release

Presentació del Consell Assessor de Pacients de CIBERERPresentación del Consejo Asesor de Pacientes de CibererCiberer's Patients advisory council release

CIBERER’s patients advisory council, formed by entities and associations of patients that has as a objective contribute to the improvement of the quality of the research of rare diseases, started its activity on Friday 7 of July with its first meeting at the University Hospital La Paz de Madrid.

This new organ will promote the participation of the patients into the activity of the CIBERER as a way to understand their needs and gain their implication to research politics of the centre. In addition, it will collect their priorities in matter of research.

The patients advisory council will also assess about the needs of formation of the associations, review the materials oriented to the patients that CIBERER realise and inform about the research resources.

Among the various members of the Council, it is necessary to highlight the presence of Mercè Bellavista, president of the Association during 13 years that is still participating actively within the ACSXF. Her participation will be our speaker to an interesting community that looks for the best for our affected ones.