9 Amendments of Frédérique RIES related to 2008/0218(CNS)
Amendment 19 #
(3) define a limited number of priority actions within the national plan for rare diseases, with concrete objectives, clear deadlines, substantial and clearly designated funding, management structures and regular reports;
Amendment 24 #
Amendment 28 #
(1) implement a European Union common definition of rare diseases as those diseases affecting no more than 5 per 10 000 persons, as a number for the whole European Union, but it is very important to know the exact distribution for each Member State;
Amendment 30 #
(4) support financially and in other ways at national or regional level specific disease information networks, registries and databases.
Amendment 34 #
(4a) provide adequate and long-term funding, for example through public/private partnerships, so as to support research efforts at national and European level and guarantee the sustainability thereof;
Amendment 35 #
(3) organise healthcare pathways for patients through the establishment of cooperation with relevant experts within the country or from abroad when necessary; cross-border healthcare, including mobility of patients and expertise through data-mobility support, health professionals and providers and provision of services through information and communication technologies should be supported where it is necessary to ensure universal access to the specific healthcare needed;
Amendment 36 #
(5) ensure that national or regional centres of expertise adhere to the standards defined by the European reference networks for rare diseases taking into due account the needs and expectations of patients and professionals., by involving patients in the activities, administration and assessment of these centres;
Amendment 38 #
(c) establisharing Member States' assessment reports on the therapeutic added value of orphan drugs at EU level within the EMEA where the relevant European knowledge and expertise is gathered, in order to minimise delays for access to orphan drugs for rare disease patients;
Amendment 46 #
1. To produce an implementation report on this Recommendation addressed to the Council, the European Parliament, the European Economic and Social Committee and the Committee of the Regions on the basis of the information provided by the Member States, not later than in the end of the fifth year after the date of adoption of this Recommendation, to consider the extent to which the proposed measures are working effectively, to improve the lives of patients affected by rare diseases and those of their families and to consider the need for further action.