5 Amendments of Thomas ULMER related to 2008/0218(CNS)
Amendment 26 #
(5a) establish at the national level multi- stakeholder advisory groups comprising all interested stakeholders should be established at the national level to guide governments in the implementation of national action plans for rare diseases. These should ensure that governments are well-informed and that the decisions taken at a national level reflect the views of society.
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).