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Description
The aim of the project which is directed at by all of the described activities is improvement of professionalization, quality and extent of activity of patients organization.It has been founded already in 1994 and it belongs among organizations with the longest history in the area of rare diseases(taking into account the organizations working in favor of patients with MPS and similar metabolic disorders).MPS remains still an incurable and lethal disorder in most cases.The specifics and complexity of the work of the patients organization follow on that.The project ensures the improvement of the level of managing,personal and communication competences of the organization.The realization of the project will lead to a better effectiveness of activities which were performed before.The activities of project are focused on the improvement and development of these areas:internal management of the organization,education of and communication with the target group,Advocacy activity both in communities and at central level,professional support of the target group.The stated aims will be achieved via the following activities:1)Reinforcing of the staff dealing with the project’s activities2)Direct support of the target group3,4)Educational activities to the target group and of the workers5)PR activities towards both lay and professional public6)Information materials for the target group and doctors.The project is submitted as a two-year project–it hence enables to better fulfill the stated indicators comparing to short-term projects.The project follows on and extends the existing portfolio of activities.The project team is experienced,the members work in the stated area for a long time,and the team will be completed by new professionals from the helping professions.Contacts with professionals who are considered to be added to the team are already established.The ultimate aim of the project is to contribute to the improvement of the care of the patients of the target group.