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.
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.