7 Amendments of Adamos ADAMOU related to 2008/0218(CNS)
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 25 #
(5a) establish at the national level multi- stakeholder advisory groups comprising all interested stakeholders to guide governments in the setting up and implementation of national action plans for rare diseases. These should ensure that governments are well-informed and that the decisions taken at national level reflect the views and needs of society.
Amendment 27 #
(5b) encourage treatments for rare diseases to be funded at national level. Where Member States may not wish or may not be able to have Centres of Excellence, this central national fund should be used to ensure that patients can travel to a Centre in another country. However, it is also vital that this separate budget is annually reviewed and adapted on the basis of the knowledge about patients needing treatment in that given year, and about eventual new therapies to be added. This should be done with the input of the multi-stakeholder advisory committees.
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 33 #
(4a) provide industry, which is one of the main funding providers on clinical research, with adequate incentives, in order for it to invest in genetic research.
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;