Information to patients

In response to the Commission’s Public Consultation “Legal proposal on Information to patients”, EURORDIS is pleased to send its comments from the rare disease patients’ perspective. Part of this document is based on a previous paper elaborated by EURORDIS in June 2007 in response to the Commission’s Draft Report on current practice with regard to the provision of information to patients on medicinal products.


EURORDIS welcomes a Commission’s initiative in this field but has serious reservations on the current proposal as it stands. In addition to the important issues already expressed by EURORDIS in June 2007 (that will be re-iterated here below), EURORDIS feels the necessity to emphasize the four following issues as major requirements within the current reflection process on information to patients: the recognition that "patient" and "consumer" are not synonyms and do not cover the same realities; the need to ensure efficacious protection against promotional information to patients; the need to combine new rights for pharmaceutical companies together with improved obligations; and finally, the identification of the risks entailed by the legislative frame as proposed by the Commission in its consultation document.

La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rare, Rare Diseases International est une initiative d'EURORDISRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect est une initiative d'EURORDIS RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases