Bulgarian Association for Promotion of Education And Science
Since its establishment in 2003, Bulgarian Association for Promotion of Education and Science (BAPES) (a non-government non-profit organisation) has been working to raise the awareness of rare diseases among the medical community and the society as whole in Bulgaria. By participating in a number of major EU-funded projects, implementing a series of epidemiological registries and organising rare disease-orientated public and scientific events, BAPES helps to stimulate fundamental, clinical and public health research on rare diseases in Bulgaria, as well as the development and provision of care and services for people with rare diseases and their families.
BAPES is an active participant in all major European public health projects in the field of rare diseases (e.g., Orphanet, EUROPLAN, EPIRARE, BURQOL-RD, RARE-BESTPRACTICES, STORE). Thanks to the partner relations with leading European institutions in epidemiology, health planning and management, health economics, medical law and ethics, BAPES staff has developed a high level expertise that transferred on national and regional level, fostering rare diseases activities in each area. BAPES closely works with other Balkan and Eastern European patient organisations and medical societies from Russia, Turkey, Ukraine, Romania, Serbia, Georgia, Armenia and Macedonia.
BAPES has consecutively launched the Information Centre for Rare Diseases and Orphan Drugs (2004), “RareDis” Medical Centre (2009), scientific journal “Rare Diseases & Orphan Drugs” (ISSN 1314-3581) (2010), Centre for Health Technology Assessment and Analysis (2013) and RareDis Solutions (2019).
Role within Screen4Care
BAPES is involved in WP1 and WP4:
Task 1.1: Comprehensive landscape analysis of ongoing initiatives for NBS of rare diseases in Europe. Objective: To analyse the ongoing initiatives and pre-existing resources for NBS for rare diseases in the EU.
Task 1.2 (BAPES is Lead): Landscape analysis of available data source and their usability of RD screening in Europe. Objective: To analyse the available data sources of rare diseases in the EU; WP6: Dissemination: with 3 (three) planned publications
Task 1.7: Analysis of HTA environment for ML-based screening technologies. Objective: To generate a comprehensive overview of the reimbursement landscape for ML-based screening technologies for rare diseases in Europe.
Task 4.4: Formulate recommendations for public health authorities. Objective: To provide preliminary evidence on the risk-benefit profile and cost-effectiveness of the EHR-based diagnostics to support post-study CE marking and reimbursement decisions, respectively.
