THE VALUE OF FACING SCHOOL: THE INCLUSION OF YOUNG PEOPLE WITH NEUROMUSCULAR DISEASES, MUSCULAR DYSTROPHIES AND OTHER RARE DISEASES IN EDUCATION

The true impact of neuromuscular diseases –many of which are classified as rare diseases– and their consequences are already serious: disability, loss of personal autonomy, and enormous psychosocial burdens, especially for young people. But after the COVID-19 pandemic, their situation worsened even more, not only because of the interruption of treatments, medical appointments, and surgery they suffered in those years, along with the loss of socialization and interaction with other minors, but also because of the uncertainty, the short-term fear, the suspension of classes, and the loss of routine. All of these are key aspects for people at high risk of suffering from depression and loss of motivation. Currently, although the measures against COVID-19 have practically been left behind, the post-COVID-19 reality for these students with neuromuscular diseases is still severe: due to the lack of medical care during 2020 and part of 2021, these students have sequelae and a high risk of contagion that makes their attendance to school more difficult or intermittent, thus generating severe difficulties for schools, teachers, and parents.

Faced with these needs, these foundations, universities, national federations of rare diseases, and schools in Spain, Portugal, France, and Italy decided to generate a strategy to support the work of teachers, schools, and parents of students through an innovative methodology and specific resources that help them develop inclusive classes adapted to the needs of students with disabilities and RD. Based on this purpose, the following objectives were defined: ‒ Helping these students achieve educational success. ‒ Training teachers on these rare neuromuscular diseases. ‒ Promoting high quality education for students with RD in on-site, mixed, and online learning. ‒ Training parents to take on a key role in their children’s education. ‒ Facilitating the digitalization of teaching to make it more inclusive and adapt it to the needs of students with obstacles. ‒ Facilitating synergies between family members, medical experts, pedagogues, and school teachers. ‒ Raising social awareness about RDs and the need for research on them.

In order to achieve these objectives, during the 28 months of the project we carried out a wide range of diverse activities distributed in 4 phases: 1) THE PLANNING PHASE, which included: activities to analyze the context of the post-COVID-19 situation of youth with muscular dystrophies; act. to define the project matrix; act. to specify the participation of the entities; act. to create the Dissemination Plan; act. to create the Inclusion, Safety, and Security Plan; and the drafting of the application itself. 2) THE PREPARATION PHASE, with: act. to review the Partnership Agreements; participant selection and training act.; creation of the working committees; and the final definition of the results and timetable. 3) THE IMPLEMENTATION PHASE, including: coordination and follow-up act.; act. For the development of results; pilot tests; act. to enhance the network; and the 4 Transnational Meetings (2 in Spain, Italy, and Portugal). 4) THE FOLLOW-UP PHASE, with: visibility act.; dissemination act.; act. For the promotion of sustainability; end-of-phase evaluation act.; act. For the evaluation of the dissemination; act. for the Europass; 2 Multiplier Events (with 4 actions); and Final Evaluation of the project.

As a result of the project activities, we developed a series of high-quality and high-impact results: ‒ MAIN RESULTS, RP1.- “INCLUSION AND EQUITY AT SCHOOL: A DIGITAL METHODOLOGICAL GUIDE FOR THE INCLUSION OF YOUTH WITH MUSCULAR DYSTROPHIES AND OTHER RARE DISEASES IN EDUCATION”, a digital methodological guide that enables the school and its teachers to meet the educational needs of these students in on-site, mixed, and online learning; and RP2.- “FACING MUSCULAR DYSTROPHIES AND OTHER RARE DISEASES IN SCHOOL: OERs FOR PARENTS, STUDENTS AND TEACHERS”, which are digital open educational resources generated by experts for beneficiaries to develop their educational competences. ‒ TANGIBLE RESULTS that support the main results in their objective: RT1.- “TESTIMONIALS AND EXPERIENCES GUIDE”, RT2.- “ADVISORY SERVICE FOR TEACHERS AND PARENTS”, RT3.- “EUROPEAN AWARENESS CAMPAIGN”, and RT4.- THE PROJECT’S WEBSITE. ‒ STRUCTURAL RESULTS that have enhanced our networking capabilities and the internationalization of entities. ‒ LEARNING OUTCOMES on teachers, students, and their educational community.