Project Duration – 08 June 2015 – 31 July 2018
Total Budget: €4 379 979
Website: RD ACTION
Official Project Partner – French National Institute for Health and Medical Research, France
Project Objectives:
- Supporting the further development and sustainability of the ORPHANET database, the largest global repository of information on rare diseases at international level;
- Providing an appropriate codification for rare diseases in health information systems;
- Continuing the implementation of the priorities identified in the Council Recommendation on an action in the field of rare diseases, with a view to ensuring the sustainability of the recommended priority actions and to support the the newly established European reference networks
- Promoting, catalyzing and triggering stakeholder debates in the field of rare diseases.
Project Coordinator: Dr. Ana Rath, INSERM, US14 – Orphanet, Plateforme Maladies Rares, Paris, France
Partners: 35, including The Bulgarian Association for Promotion of Education and Science