info@challenges.mk | 070 705 446

EUROPLAN CONFERENCE R. MACEDONIA – Long term system solutions for rare diseases

EUROPLAN CONFERENCE R. MACEDONIA – Long term system solutions for rare diseases

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

europlan

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.

Other Posts

Новости

Пиши ни

Sending your message...