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Table 2 Haemoglobinopathies: summary indicators in 10 European countries

From: Haemoglobinopathies in Europe: health & migration policy perspectives

Haemoglobinopathies report summary of indicators
Country Perceived influence of migration on epidemiology National/ local THAL registry National/local SCD Registry Structured national neonatal screening programme Structured national antenatal screening programme National/regional rare disease plan expected by Haemoglobin disorders focused plans or focus in rare disease plans Reimbursement of treatments Country awareness
Belgium high influence no national local No rules yes, work in progress no yes low
Cyprus low influence traditionally, but increasing national no no Yes, by church and civil authorities (for the Turkish community) yes approval planned in 2013 yes yes very good
France high influence national local National, targeted to the at risk population Antenatal diagnosis available upon request Yes (already implementd) yes partly low
Germany high influence no no no (trial Berlin) no yes, work in progress 2013 N/A partly very low
Greece low influence: disorders linked to indigenous to population National (on Haemoglobinopathies) yes yes yes yes yes (for insured patients and asylum seekers) high to some extent only
Italy low influence: disorders linked to indigenous to population regional (on Haemoglobinopathies) local/regional local/regional yes, work in progress 2013 N/A yes (depending on the region) generally low, high in specific regions
The Netherlands high influence local local yes yes yes, work in progress 2013 N/A yes low
Spain high influence National scientific registry not official National paediatric scientific registry regional No rules yes no In general yes, some regions partially low
Sweden high influence no no no no yes, work in progress 2013 N/A yes very low
UK high influence yes yes yes yes yes, work in progress 2013 yes yes relatively high