<< Background >>Neuromuscular diseases constitute the large group of diseases that affect any of the components of the motor unit, many of which are classified as rare diseases. The statistics on the incidence of these neuromuscular diseases and muscular dystrophies are estimated figures of 1:3500 newborns with Duchenne Muscular Dystrophy (DMD) and 1:6000 newborns with Spinal Muscular Atrophies (SMA).However, the figures sometimes mask the true impact of these diseases and their consequences on those who suffer from them. Suffering from these diseases means suffering from a disease without a cure and without effective treatments to alleviate their linked disabilities, the loss of personal autonomy, and the enormous psychosocial burden that they generate.One of the most terrible things about these diseases is not only their consequences, but that many of them especially impact young persons and children. At a time when youth is focused on new discoveries, on their desire to learn, to start dreaming of what will become of their lives, these young people suffering from a rare disease do not know if they will have a future. More than 50% of the cases of rare diseases appear during childhood, and they are fatal in many cases, which means that a high percentage of those who suffer from them are young.If life with a neuromuscular disease or dystrophy is complicated, after COVID-19 it has become much more so, not only because of the most obvious reasons, like the interruption of treatments, medical appointments, and operations (70% of families report that their interventions and therapies have been canceled due to the closure of medical centers, Feder-2020), or the loss of socialization and interaction with other children, which is also part of their multidisciplinary therapy; but also because of the uncertainty, the fear of the short term, the suspension of lessons and the loss of a routine, all of them being fundamental aspects for people at high risk of suffering from depression and loss of motivation (experts identify a lack of motivation to face curricular aspects among the main difficulties, and to move in non-directed spaces in almost 42% of the cases).Even now that the toughest measures against COVID-19 seem to be behind us, the post-COVID-19 reality for students with these diseases is even worse. Due to their medical condition, aggravated by the lack of attention during 2020 and part of 2021, these students have aftermaths and a serious risk of contagion that makes their attendance to school difficult or intermittent.This creates serious difficulties for:- The schools, overwhelmed with the consequences and measures against the pandemic, are not prepared to adapt their facilities to these students with serious mobility difficulties, nor to implement effective mixed and distance learning modalities to avoid stopping their education. - Teachers, lacking resources and oversaturated with the implementation of the new post-COVID-19 methodologies, according to the OECD-2020 report, do not know about these diseases (neither their consequences nor the best pedagogical methodologies to apply) nor do they have the possibility to undertake the special education of these students with guarantees (due to a lack of time, the difficulty of contacting experts, and a lack of specific materials).- Parents, who in many cases have become responsible not only for the education of their children in mixed or distance learning, but also for the therapies they need, are not prepared for it because they do not have enough resources and specific training to train them (Kantar Group and Affiliates 2021).<< Objectives >>Faced with these needs (accredited by experts, educators, international agencies, and national and European entities of rare diseases), an intersectorial partnership has been comprised by foundations (Fundación Isabel Gemio and Foundation Maladies Raras), social organizations (Parent Project), universities (Universidade de Evora), federations (ASEM, UNIAMO), and schools (CEIP Clara Campoamor) of Spain, Portugal, France, and Italy, to facilitate the schooling process of children and young persons with these diseases in schools across Europe.With the project “THE VALUE OF FACING SCHOOL” we propose the creation of a partnership for cooperation, not only through improving the quality of work, activities and practices of the organizations and institutions involved, developing the capability of the organizations to work at the transnational level and between sectors, attend to common priorities and needs, and promote a change in educational methods with students with muscular dystrophies, but also to:- HELP STUDENTS WITH RARE DISEASES, ESPECIALLY DYSTROPHIES AND NEUROMUSCULAR DISEASES TO ACHIEVE EDUCATIONAL SUCCESS by generating methods especially adapted to their characteristics and needs that include schools, teachers, and parents.- CONTRIBUTE TO TRAIN TEACHERS ON THESE RARE DISEASES (RD), helping them to develop transversal skills and specific knowledge that facilitates teaching their students and their inclusion in the classrooms, and providing them with useful resources and materials to do so.- PROMOTE SCHOOLS ABLE TO OFFER A HIGH QUALITY EDUCATION TO STUDENTS WITH RD IN THE THREE MODALITIES: ON-SITE, MIXED, AND DISTANCE LEARNING by offering guidelines and recommendations that include a joint work with experts and entities of the most recognized prestige from all over Europe, and the correct use of digital tools to achieve an effective education. Based on the previous study, we can state that it is not so important to generate new tools, but to learn to properly use the existing ones.- TRAIN PARENTS SO THEY CAN TAKE ON A KEY ROLE IN THE EDUCATION OF THEIR CHILDREN FROM A CORRECT PERSPECTIVE, not only promoting the training of parents of students with RD (who due to the condition of their children should be responsible for ensuring their education), but also generating correct guidelines for their training through their communication with teachers, schools, and health experts.- FACILITATE THE DIGITIZATION OF EDUCATION TO MAKE IT MORE INCLUSIVE AND ADAPTED TO THE NEEDS OF STUDENTS WITH BARRIERS, generating guidelines for the integration of existing digital tools in the education of students with neuromuscular diseases and muscular dystrophies, especially in mixed and distance education.- FACILITATE SYNERGIES BETWEEN FAMILY MEMBERS, MEDICAL EXPERTS, PEDAGOGUES, AND SCHOOL EDUCATION TEACHERS, generating a joint and collaborative work that contributes to the creation of a more inclusive and effective school education for all, even if they suffer from rare diseases.- PROMOTE SOCIAL AWARENESS ON RARE DISEASES AND THE NEED FOR EVERYONE TO CONTRIBUTE TO THEIR RESEARCH AND THE EDUCATIONAL INCLUSION OF THOSE SUFFERING FROM THEM, thanks to the collaboration of the most important Spanish production companies and top-level public figures like journalist Isabel Gemio, we believe that we can play a significant role in promoting social support for the creation of a more inclusive post-COVID-19 education.<< Implementation >>In order to achieve these ambitious objectives, the partner entities have already started very diverse activities structured in 4 phases:1) PLANNING PHASE- CONTEXT ANALYSIS ACTIVITIES, an analysis of the educational situation generated as a result of COVID-19 of young people in school age suffering from muscular dystrophies or RDs.- ACTIVITIES TO DEFINE THE PROJECT MATRIX, where the several of the needs found were defined and related to the objectives, results, activities, and indicators of the project.- ACTIVITIES FOR THE CONCRECTION OF THE PARTICIPATION OF THE ENTITIES IN THE PROJECT, defining those responsible for the project, assigning the previous activities, and establishing the foundations for the future DOCUMENT OF AGREEMENTS.- ACTIVITIES FOR THE CREATION OF THE DISSEMINATION PLAN, which structures the visibility of the project and the dissemination of results according to the duality of internal and external communication.- ACTIVITIES FOR THE CREATION OF THE INCLUSION, SAFETY, AND PROTECTION PLAN.- ACTIVITIES TO DRAFT THE APPLICATION.2) PREPARATION PHASE- ACTIVITIES TO SIGN THE AGREEMENTS WITH PARTNERS, it will allow the final drafting of the documents, with the contributions of the ANE in case of concession.- ACTIVITIES FOR THE SELECTION AND PREPARATION OF PARTICIPANTS, carried out by each of the partners, especially those that work directly with students with obstacles.- CREATION OF THE WORK COMMISSIONS, the constitution of the five work teams led by each of the partner entities (according to their capabilities).- ACTIVITIES FOR THE DEFINITIVE CONCRETION OF THE RESULTS AND SCHEDULE OF THE PROJECT through a participatory process and both virtual and on-site meetings between the various participants.3) ACTIVITY EXECUTION PHASE- COORDINATION ACTIVITIES AND VIRTUAL MONITORING with monthly virtual meetings of the various work teams.- ACTIVITIES FOR THE CREATION OF RESULTS, both main and tangible results.- PILOT TESTS OF THE MAIN RESULTS, done in schools to assess their validity.- ACTIVITIES TO ENHANCE THE NETWORK: activities to enhance the internationalization of the network, boosting the networking of its teams, promoting new transnational projects, and exchanging experiences and good practices.- TRANSNATIONAL MEETINGS: 4 meetings, two in Spain, one in Italy, and one in Portugal.4) MONITORING PHASE- VISIBILIZATION ACTIVITIES carried out from the beginning of the project and aimed at publicizing this initiative, the Erasmus+ Programme, and raising awareness on the importance of research on rare diseases and the educational inclusion of those who suffer from them.- ACTIVITIES FOR THE DISSEMINATION OF THE RESULTS, to present the results and ensure that they are used and/or replicated by hundreds of schools.- ACTIVITIES FOR THE PROMOTION OF SUSTAINABILITY, various activities to ensure the sustainability of the project.- END OF PHASE EVALUATION ACTIVITIES carried out at the end of each of the phases to detect possible errors and correct them.- ACTIVITIES FOR THE FINAL EVALUATION OF THE DISSEMINATION STAGE, comprised of a national meeting in each participating country and a virtual meeting of the Monitoring and Quality Team.- ACTIVITY TO GENERATE THE EUROPASS AND ACCREDIT THE PARTICIPATION.- FINAL EVALUATION OF THE PROJECT: one national meeting per country and one virtual meeting with the heads of the project.All these activities will be carried out from an inclusive perspective (enabling the participation of the beneficiaries themselves, most of them with obstacles), a digital perspective (since it is currently the only way to ensure inclusive participation), and respectful with the environment (by reducing the carbon footprint and the use of paper/printed materials).<< Results >>In order to achieve the proposed objectives in an effective way, the project will develop a series of high-quality and highly impactful results on the four main beneficiary groups: students who suffer from rare diseases, their families, teachers, and schools. These results have been structured in:- MAIN RESULTS:High-quality tangible results capable of answering to the needs of the target groups with a high degree of innovation and impact; all of them will be digital to facilitate their dissemination and the inclusive digital transition (digitization) of schools with students suffering from rare diseases.This project will have two of them:RP1- INCLUSION AND EQUITY IN SCHOOL: A DIGITAL METHODOLOGICAL GUIDE FOR THE INCLUSION OF YOUNG PEOPLE WITH MUSCULAR DYSTROPHIES AND OTHER RARE DISEASES IN EDUCATION. This is a DIGITAL METHODOLOGICAL GUIDE that will decisively help the school and the teachers to meet the educational needs of students with muscular dystrophy and other rare diseases through the three existing modalities: on-site, mixed, and distance learning. This guide will provide effective guidelines to help any teacher or school with a student with these obstacles among their students, without it being an excessive burden, especially in the post-COVID-19 situation in which we are; but also to parents, who often must assume the role of educators because their children cannot go to school due to the severe consequences of their disease.The objective of this guide is not only to inform about what these diseases are and of their possible symptoms, but also to provide methodological guidelines, curricular adaptations, and evaluation mechanisms adapted to the student’s reality, to provide the student with a high quality school training adapted to his/her educational needs and different stage of development.RP2- FACING MUSCULAR DYSTROPHIES AND OTHER RARE DISEASES IN SCHOOL: OERs FOR PARENTS, STUDENTS, AND TEACHERS. These are digital open educational resources (OERs) adapted to the beneficiaries and developed by experts, that really contribute to developing the educational competences of students with muscular dystrophy and other rare diseases. They will allow teachers to carry out their daily work in a normal way and with the full inclusion of the student in the dynamics of the classroom, and also parents in their role of supporting teachers when their children have to access mixed and distance learning.- TANGIBLE RESULTSHigh quality and tangible results capable of supporting the action of the main results to reach the project’s objectives:RT1- TESTIMONY AND EXPERIENCES GUIDE that collects the experiences and pilot tests carried out in schools where the results have been implemented.RT2- ADVISORY SERVICE FOR TEACHERS AND PARENTS, a service to which parents and teachers can resort to experts in rare diseases.RT3- A EUROPEAN AWARENESS CAMPAIGN on social networks and the internet, with videos about the project and its results, to make them widely known and to promote their use, in collaboration with famous personalities and highly relevant media outlets.RT4- THE WEB PLATFORM OF THE PROJECT, where all the results, the explanation of the project, and the services derived from it will be accessible. It will allow to fully know the project, replicate it, or join the intersectorial partnership generated.- STRUCTURAL RESULTSIntangible results that will enhance the networking capability and the internationalization of entities, ensuring the creation of a strong and sustainable partnership for cooperation capable of enhancing the educational inclusion of students with muscular dystrophy or other rare diseases in EU.

As recognized by the Council Recommendation 2009/C 151/02, rare diseases (RD) are a prime example of a research area that can strongly profit from coordination on a European and international scale. RD research should be improved to overcome fragmentation, leading to efficacious use of data and resources, faster scientific progress and competitiveness, and most importantly to decrease unnecessary hardship and prolonged suffering of RD patients. In the specific context of the massive generation, need for reuse and efficient interpretation of data, introduction of omics into care practice and the structuration of RD care centers in European Reference Networks, it appears crucial and timely to maximize the potential of already funded tools and programmes by supporting them further, scaling up, linking, and most importantly, adapting them to the needs of end-users through implementation tests in real settings. Such a concerted effort is necessary to develop a sustainable ecosystem allowing a virtuous circle between RD care, research and medical innovation. To achieve this goal, the European Joint Programme on RD (EJP RD) has two major objectives: (i) To improve the integration, the efficacy, the production and the social impact of research on RD through the development, demonstration and promotion of Europe/world-wide sharing of research and clinical data, materials, processes, knowledge and know-how; (ii) To implement and further develop an efficient model of financial support for all types of research on RD (fundamental, clinical, epidemiological, social, economic, health service) coupled with accelerated exploitation of research results for benefit of patients. To this end, the EJP RD actions will be organized within four major Pillars assisted by the central coordination: (P1): Funding of research; (P2): Coordinated access to data and services; (P3) Capacity building; (P4): Accelerated translation of research projects and improvement outcomes of clinical studies.

The European Rare Diseases Research Alliance (ERDERA) aims to improve the health and well-being of the 30 million people living with a rare disease in Europe, by making Europe a world leader in Rare Disease (RD) research and innovation, to support concrete health benefits to rare disease patients, through better prevention, diagnosis and treatment. This Partnership will deliver a RD ecosystem that builds on the successes of previous programmes by supporting robust patient need-led research, developing new diagnostic methods and pathways, spearheading the digital transformational change connecting the dots between care, patient data and research, while ensuring strong alignment of strategies in RD research across countries and regions. Structuring goal-oriented public-private collaborations targeted at interventions all along the R&D value chain will ensure that the journey from knowledge to patient impact is expedited, thereby optimising EU innovation potential in RD. To support its ambition and missions ERDERA has been designed as a comprehensive and integrated ecosystem of which structure can be compared to an institute encompassing three main parts: (i) funding, (ii) internal (in house) Clinical Research Network that implements research activities targeting clinical trial readiness of RDs and accelerating diagnosis and translation of research discovery into improved patient care, and (iii) related supporting services (Data, Expertise, Education and Training) as well as an acceleration hub that serve external and internal RD community, all supported by all-embracing coordination and strategy and foundational (inter)national alignment.