European/International Guidelines on Aniridia: The Patients’ Point of View

Abstract

Aniridia is a rare disorder and knowledge about it is insufficient and dispersed. Clinical practice guidelines are therefore a fundamental tool to ensure clinical appropriateness, equity of care and a comprehensive approach to the complexity of the disease. Guidelines development requires scientifically grounded methodologies, a multidisciplinary panel of strongly committed experts, involvement of public health authorities. As these conditions are hardly ever recurrent in the field of rare diseases, the role of patients’ organizations is crucial, because they can promote and collaborate to this process as a reliable and active partner together with physicians, researchers and public health institutions. Guidelines do not only define what must or must not be recommended: they also determine what issues remain undecided or controversial, thus helping in establishing priorities for confrontation among professionals and for research projects. Aniridia Europe, the federation of aniridia associations in Europe, as a partner of the RareBestPractices project led by Eurordis, will cooperate in collecting and disseminating the already existing documents on aniridia (the Spanish Protocol and the Italian Guidelines) and will promote the development of European/international guidelines based on a shared consensus among the professionals involved and the patients’ communities.