7 Amendments of Silvia-Adriana ȚICĂU related to 2008/0218(COD)
Amendment 9 #
(1) elaborate and adopt a comprehensive and integrated strategy, by the end of 20110, aimed at guiding and structuring all relevant actions in the field of rare diseases in the form of a national plan for rare diseases;
Amendment 10 #
(1) implement a European Union common definition of rare diseases as those diseases affecting no more than 25 per 10 000 persons;
Amendment 11 #
(4) support atEuropean, national or regional level specific disease information networks, registries and databases.
Amendment 13 #
(3) organise European healthcare pathways for those patients suffering from rare diseases through the establishment of cooperation with relevant experts within the country or from abroad when necessary; cross-border healthcare, including mobility of patients, 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 15 #
(2a) facilitate patient access to information existing at European level concerning medicines, treatments or treatment centres in the Member States or third countries providing medical care specifically suited to their illnesses;
Amendment 16 #
(-1) Develop a European website (one- stop shop providing the following information: (a) existence of specific research into rare diseases, the findings thereof and their availability to patients, (b) available medicines for each rare disease, (c) the treatment existing in each Member State for each rare disease, (d) existing specialist medical centres in Member States or third countries for each rare disease;
Amendment 17 #
(-1a) Submit a legislative proposal, facilitate access for patients with rare diseases to specific healthcare services existing at European level; Measures to facilitate mobility of patients with rare diseases and their treatment in specialised European centres will ensure more comprehensive case records, making it possible to develop more effectively specific patient treatment infrastructures;