Activities of Antonios TRAKATELLIS related to 2008/0218(CNS)
Plenary speeches (2)
Rare diseases (debate)
Rare diseases (debate)
Reports (1)
REPORT Report on the proposal for a Council recommendation on a European action in the field of rare diseases PDF (271 KB) DOC (369 KB)
Amendments (7)
Amendment 17 #
Proposal for a recommendation
Recital 20
Recital 20
(20) Patients and patients’ representatives should therefore be involved at all steps of the policy and decision-making processes. Their activities should be actively promoted and supported, including financially, in each Member State, but also on an EU level in terms of pan-EU patient support networks for specific rare diseases.
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 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 42 #
6. Empowerment of independent patient organisations (1) take action to ensure that patients and independent patients’ representatives are duly consulted at all steps of the policy and decision- making processes in the field of rare diseases, including for the establishment and management of centres of expertise and of European reference networks and for the elaboration of national plans; (2) support the activities performed by independent patient organisations, such as awareness- raising, capacity-building and training, exchange of information and best practices, networking, outreach to very isolated patients; (3) include in the national plans for rare diseases provisions on the support to and the consultation of patient organisations as referred to in paragraphs (1) and (2).
Amendment 44 #
(2a) ensure that funding for patient organisations which is not directly linked to single pharmaceutical companies is provided;
Amendment 45 #
(3) include in the national plans for rare diseases provisions on the support to and the consultation of independent patient organisations as referred to in paragraphs (1) and (2).