KITS DE AYUDA EDUCATIVA EN EL ÁMBITO DE LAS ENFERMEDADES RARAS: LLEVAR LA REALIDAD DE LAS ENFERMEDADES RARAS A LA FP

Rare Diseases (RDs) include thousands of diverse pathologies of low prevalence, usually chronic, with very severe sequelae and an unfavorable prognosis. But due to the lack of knowledge about these RDs (a lack of training and information from care specialists), the professionals who care for those who suffer from them run the risk of being negligent and even harmful to them. Especially in Vocational Training (VET), there is very little curricular content related to RDs: teachers do not have specific training, and experts are not sufficiently involved (generating less qualified professionals and inclusion problems for people with RRS), which makes specific training, educational resources, and a multidisciplinary training approach essential. In order to address these needs, our network of expert entities in RDs developed this project, with which we have provided the VET teaching programme (in health and socio-cultural services) with specific contents in RDs, a course for VET teachers, and a training methodology with specific OERs, achieving an enormous impact on future professionals and on the well-being of people with RDs.

The main objectives of this project were to transform Vocational Training (VET) into a more inclusive and accessible education for people with RDs, encouraging them to develop their studies in equity, in addition to training future professionals without RDs in the care of this target group, avoiding possible negligence due to the lack of current knowledge about RDs, opening new paths to employability. Specifically, we have met objectives related to: 1. The Network of entities, such as improving our quality of work, activities, and practices by enhancing our sustainability and digital processes; develop our capabilities to work transnationally and across sectors; and addressing the priorities and needs common to the field of VET and RDs. 2. VET, such as promoting training in RDs in health and socio-cultural services vocational training; to improve teachers’ practices and training in RDs; and to transform VET and its action towards people with RDs through innovative digital methodologies. 3. People with RDs themselves, such as promoting the inclusion and safety of those who suffer from them; raising awareness of RDs in Europe; and facilitating access for students with RDs to VET.

All the activities planned and successfully implemented within the framework of the project were structured in 5 Work Packages: ‒ WP1. PROJECT MANAGEMENT: general coordination, technical and quality monitoring, periodic virtual meetings, initial training of participants, and application of transversal approaches in inclusion, sustainability, and digitalization. ‒ WP2. DEVELOPMENT OF THE GUIDE: design and drafting of the Guide for the inclusion of students with RDs in VET, selection of participants, the M1 ‒ WP5. DISSEMINATION: creation of the Dissemination and Sustainability Plan, development of the Website, campaigns on social networks, 5 Multiplier Events (2 in ES, IT, PT, FR), creation of the Advisory Service, and creation of a European Network active in 12 countries, reaching more than 2500 beneficiaries.

During the course of the project we have developed, in addition to several tangible, structural, and learning outcomes, 4 main results: ‒ A METHODOLOGICAL GUIDE (R1) for the inclusion of students with RDs and on the use of educational kits for the care of these students in VET. ‒ The EDUCATIONAL KITS (R2) themselves for the care of people with RDs (educational materials for teachers and students of vocational training in health and sociocultural services). ‒ The VIRTUAL COURSE (R3) to train VET teachers in the use of resources and methodology. ‒ An ADVISORY AND GUIDANCE SERVICE FOR TEACHERS (R4) by experts in RDs. These results are complemented by the tangible results (R5: the project website and its dissemination materials and R6: the European Network itself), structural results (R7: improvement of networking and the international impact of entities, R8: improvement of sustainability and digital practices of entities, and R9: improvement of synergies between entities and VET), and learning results (R10: development of students’ competences, R11: development of teachers’ competences, and R12: improvement of the educational competences of students with RDs).