EUROPLAN CONFERENCE R. MACEDONIA – Long term system solutions for rare diseases
„Together we are building a future for people with rare diseases“
10 November, Holiday Inn, Skopje
AGENDA
| 10.00 – 10.10 | Opening speech | ||
| Rebeka Jankovska-Risteski, NARDM | Introduction | ||
| 10.10 – 10.30 | Rare Diseases in Macedonia: Problems and Solutions Needed | ||
| Anja Bosilkova Antovska, WILSON MACEDONIA | Regulative on rare diseases in Macedonia | ||
| Vesna Aleksovska, LIFE WITH CHALLENGES | Draft national plan for rare diseases in Macedonia | ||
| 10.30 – 11.30 | Experience and Best Practices from EU and the Region | ||
| Ariane Weinman, EURORDIS | EUROPLAN Project in EU Countries: Why are National Plans Important? | ||
| Marie-Pierre Bichet, French Alliance for RD | Achievements of the French National Plan for Rare Diseases: Methodology, Monitoring, and Governance of National plans | ||
| Davor Duboka, National Alliance for RD – Serbia | Progress in Rare Diseases in the Past 5 Years in Serbia | ||
| Sanja Peric, National Alliance for RD – Croatia | Help-Line for Patients and Families with RD | ||
| Vlasta Zmazek, Debra Croatia | Social Innovation Care | ||
| Vlado Tomov, National Alliance for RD – Bulgaria | Center for Rare Diseases / Progress Made with the National Plan | ||
| Borislav Djurikj, Association for rare diseases, Bosnia and Herzegovina |
Progress in Rare Diseases in the Past 5 Years in BiH | ||
| 11.30 – 11.45 | Coffee break | ||
| 11.45 – 12.45 | Working Groups on RD Priorities in Macedonia | ||
| Subject | Main participants* | ||
| 1) Regulative for rare diseases in R. Macedonia | Commission for health – Parliament of R. Macedonia, Government of R. Macedonia, Ministry for finance | ||
| 2) Commission for rare diseases and registry for rare diseases | Ministry of health, Commission for rare diseases of R. Macedonia | ||
| 3) Diagnosis and treatment (drugs, supplements, orthopaedic devices) | Macedonian Academy for Science and Art, Health Insurance Fund, Agency for Drugs | ||
| 4) Centre for rare diseases, social services | Ministry for labour and social policy | ||
| 12.45 – 13.30 | Presentations from work groups and discussion | ||
| 13.30 – 13.45 | Conclusions | ||
| 13.45 – 14.30 | Cocktail lunch | ||
*The work groups are just a preposition, the representatives can choose where to participate. Also the participants from patient organizations will be included in the work groups. Each group will have a facilitator.
