The present situation of Rare Diseases in Central/Eastern Europe? The role of patient organisations

Results 1, At the level of medical and social services: It is still “incidental” to get to the appropriate expert or centre for diagnosis or treatment. It is difficult to find even the services, because of the lack of suitable “pathways” and referral. There are long delays in obtaining the first appointment, resulting in defencelessness and regional irregularity. The overall consequence is the lack of access to medical and to social services. We also have difficulties with the supply of orphan medication and with the long duration of hospitalisations. 2, At the level of patient organisations: financial scarcity and uncertainty is typical and combined with inappropriate infrastructural background and human resources.