4 Amendments of Daciana Octavia SÂRBU related to 2008/0218(CNS)
Amendment 15 #
Proposal for a recommendation
Recital 13
Recital 13
(13) The Community added-value of European reference networks is particularly high for rare diseases by reason of the rarity of these conditions, which implies both limited number of patients and scarcity of expertise within a single country. Gathering expertise at European level is therefore paramount to ensure equal access to accurate information, appropriate and timely diagnosis and to high quality care to rare disease patients.
Amendment 16 #
Proposal for a recommendation
Recital 16 a (new)
Recital 16 a (new)
(16a) Specialised social services, including those that are therapeutically and psychologically focused, should be established in order to avoid social exclusion and discrimination.
Amendment 22 #
(5) include in the national plans provisions designed to ensure equitable access to high quality care, including diagnostics, primary preventive measures, treatments and orphan drugs, to all rare disease patients throughout their national territory with a view to ensuring equitable access to quality care on the basis of equity and solidarity throughout the European Union.
Amendment 29 #
(4) support at national or regional level specific disease information networks, registries and databases, including regularly-updated information, which is accessible to the public, on the internet .