4 Amendments of Peter LIESE related to 2008/0218(CNS)
Amendment 37 #
(b) European guidelines on population screening and diagnostic tests, including genetic tests like heterozygote testing and polar body diagnosis, ensuring high- quality testing and appropriate genetic counselling while respecting ethical diversity in the Member states;
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).