With the main objective to promote the participation of the small and medium sized enterprises (SMEs) in the Framework Programme in the area of rare diseases, this project aims the establishment of a European research Network on Alternating Hemiplegia in Childhood (AHC) which is a rare infant neurological disorder. The Network will gather the critical mass at a European level and will create an interface of basic research, clinical competence, patients and industry in the specific area. It will also expand to include other rare paediatric neurological diseases, and outside Europe. The initial activities of the Network will be to complete an international database on AHC patient, as well as to disseminate information on the disease and the project. Integration of SMEs will stimulate and strengthen collaboration between SMEs and researchers and ensure direct and timely translation of basic research results into economic benefits for SMSs and will lead to considerable benefits for public health. The developed strong partnership between patients organisations and companies will facilitate clinical research towards the development of a orphan medicinal product. On the other hand, the AHC Network will promote the EC policy on rare diseases among the SMEs and the public, and will assist the active participation of SMEs in the Community Research programmes.
Keywords:
Integration of relevant SMEs, fostering co-operation academia, patient organisation and industry, hemiplegia, database, network
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