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 voce dei malati rari in EuropaEURORDIS Rare Diseases International, la voce internazionale dei malati rariRare Disease International RareConnect è un'iniziativa di EURORDIS che mette in contatto malati, famiglie ed esperti per condividere esperienze in un forum multilingua e moderato RareConnect Il Programma Rare Barometer è un’iniziativa di EURORDIS volta a condurre indagini con l’obiettivo di trasformare le esperienze delle persone affette da malattie rare in cifre e fatti che possono essere condivisi con i decisori politici.Rare Barometer La Giornata delle Malattie Rare, una campagna di sensibilizzazione internazionale che si svolge l'ultimo giorno di febbraio di ogni anno.Rare Disease Day La Conferenza Europea biennale sulle Malattie Rare è il più grande incontro di soggetti interessati al tema delle Malattie Rare in Europa. L'ECRD è un'iniziativa di EURORDISEuropean Conference on Rare Diseases