The history of
the Committee
With the aim of developing a national committee for rare diseases, a technical committee was established in January 2011, which took over the coordination of the entire project.
Initially, the Commission collected data related to the structures/actions that exist/have been carried out in Cyprus. Data were collected through questionnaires, focus group meetings/discussions.
In June 2011, a two-day workshop was held for the development of our country’s national strategy for rare diseases with the wide participation of representatives of the Ministries and Services involved, health professionals specializing in rare diseases and organizations representing patients, their relatives and friends. Dr. participated in the workshop with a presentation and active involvement in the Working Groups. Domenica Taruscio (Director, National Center for Rare Diseases, Italy, EUROPLAN Program Coordinator). During the workshop, presentations were made on the existing European data and the current situation in our country. Afterwards, the various axes of the strategy under development were discussed in Working Groups.
The content of these discussions, with the participation of all involved bodies, was recorded and developed in the various action axes of the existing strategy.