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 voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases