Duration: 01 April 2010 – 01 April 2011
EC Contribution: € 749 404,98
Website: RD-ACTION 2
General objectives:
- to provide the community at large, via a user-friendly portal in 5 languages, with comprehensive information
- to contribute to the improvement of the diagnosis, care and treatment of patients with rare diseases (RD)
- to map healthcare services in the EU and build indicators
- to help involve the international community in producing knowledge on RD
- to improve knowledge of the characteristics and epidemiology of RD by collecting and disseminating this information
- a tool to retrieve possible diagnoses through a search by clinical signs and symptoms will assist diagnosis
- a directory of professional services throughout Europe is provided with the aim of contributing to the appropriate use of expert clinical services and promote quality assurance in laboratories offering medical genetic testing
- a directory of patient organisations that will help fight isolation and empower patients
- comprehensible information on the stage of development of orphan drugs and their availability in MS will be provided
Coordinator: Institut national de la santé et de la recherche médicale