Education for children, adolescents and young adults with (JNCL) The project aim and the main target group: To improve educational opportunities and non-medical interventions for a disadvantaged and very low frequency group in Europe – children and young people with Juvenil Neuronal Ceroid Lipofuscinosis (JNCL), also called Spielmeyer-Vogt disease or Batten disease. The disease is characterized by a developmental course including blindness, epilepsy, speech problems, cognitive regression/dementia, motor coordination problems and emotional reactions including anxiety and depression. There are 33 individuals with JNCL in Norway , the incidence level in other European countries is approximately at the same level. Background: A comprehensive medical and biological research has been going on for the last decades in order to understand the nature of the disease. There is no medical cure yet and the disease leads to premature death, often 20 – 30 years of age. There is a substantial need for alternative initiatives and actions within education and other non-medical services to meet the challenges of the disease in best possible way. There are very few organisations in Europe responsible for non-medical service provision for individuals with JNCL diagnosis because of the low incidence. Non-medical knowledge of the target group’s needs and best practice is scattered and hidden for others, and written documentation hardly exists. Target groups: 1. Children and young people with JNCL diagnosis and their families 2. Children and young people with other dementia diseases and their families (parts of the project may be relevant for these groups) 3. Professionals within non-medical service provision 4. Relevant higher education institutions Objectives: 1. Compose a non-medical textbook of JNCL that focuses on the possibilities and importance of formal, non-formal and informal learning in a lifelong perspective and quality of life issues. To be used as a basic foundation of knowledge and improved evidence-based non-medical services for the target groups 2. Develop educational tools based on the textbook to optimise learning conditions and make educational planning/implementation more effective and targeted. 3. Disseminate the project results to relevant stakeholders and through presentations in conferences, seminars and meetings 4. Make plans of actions to ensure future sustainability in close cooperation with key organisations such as higher education, relevant service organisations, peer organisations etc. 5. Make plans of actions to sustain networking and cooperation between relevant professionals and organisations Project period and organisation model Project period: 1. December 2014 to 31. November 2017. Project participating organisations: Statped Heimdal and Norsk Spielmeyer-Vogt Forening (Norway), WESC Foundation and the Batten Disease Family Association (England/UK), Bildungszentrum für Blinde und Sehbehinderte and NCL-Gruppe Deutschland (Germany), Onerva Mäki School and Suomen JNCL-perheiden tukiyhdistys ry (Finland) and Royal Blind School (Scotland). A Working/Steering committee has been appointed and there are resource groups available for the project composed by researchers on JNCL from various disciplines. Activities and methodology The project has 3 main phases: (1) Fact finding and developing new knowledge (2) Documentation/textbook and development of educational tools (3) Dissemination The project will be organised in periods of 6 months in accordance with different working activities. The Working/Steering committee plan to have 2-days transnational meetings per year attached to these periods with the following agenda: • Evaluate the last implemented period • Compose a detailed plan of action including mid-term goals for the next period The textbook and the educational tools will be translated to Finnish, German and Norwegian and will be available as PDF files. The textbook will be submitted to relevant institutions of higher education, relevant service providers and peer organisations in all participating countries at no cost. Longer term benefits The Working/Steering committee will assist higher education and relevant service providers in preparing curriculums and service portfolios based on the textbook. Training of professionals in using the educational tools will be organised in all participating countries. The Working/Steering committee will organise meetings/seminars in each participating country in order to promote project results. Each participating country will make plans of actions in how to ensure the sustainability and further development of knowledge and service provision, and to ensure further collaboration between project participating organisations. The project results will be presented in different international/national conferences after 2017.