ExtraCareinRare

ExtraCareinRare is targeted at satisfying the need of people suffering from rare diseases and their families for specialized social services, with a comprehensive care approach, targeted at increasing the capacity of rare disease families for independent living, social and work realization. People affected by rare diseases suffer from complex afflictions, often chronic in nature, causing a multitude of physical, mental and psychological impairments. These impairments, as well as the variety of social challenges, caused by rare diseases, underline the necessity of integrated care, aimed at reducing their impact on the patient and the family members. The main goal of the project is to increase the users' capacity for independent living and also to facilitate their social and work realization, by establishing and supplying a specialized and innovative social service -a center for people with rare diseases. It is in the scope of the project to offer the social service to at least 40 individuals with rare diseases and their families, providing professional training to 15 people of working age with a rare disease and also hiring 3 people with a rare disease, to work at the center for a period of 6 months. The key activities of the project are:Managing and organizing the project; Activities involving informing and communicating the project; Renovation and repairs of a facility to supply the social service and purchase the necessary equipment and furnishings; Adapting new workplaces for people with disabilities; Acquirement and localization of an innovative interactive system for neurocognitive rehabilitation of people suffering from disabilities, caused by rare diseases; Development of the innovative social service – Center for people with rare diseases; Offering the service to people with rare diseases, suffering from permanent disabilities, and their families; Offering education and providing employment to people with rare diseases, suffering from permanent disabilities.

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