Welcome to the Erasmus+ project THE VALUE OF FACING SCHOOL
The main objective of the Erasmus+ project THE VALUE OF FACING SCHOOL, cofunded by the European Union, is to create a partnership for cooperation, improving the quality of the work, activities and practices of the organizations and institutions focus on rare diseases and neuromuscular dystrophies. Besides, it should develop the capacity of the organizations to work transnationally and across different sectors, to address common priorities and needs, and to make a change in educational methods to students affected by these pathologies.
After the COVID-19 pandemic, young people with neuromuscular diseases saw their situation worsen (disruption of treatments, medical appointments, and surgeries; loss of socialization and interaction… leading to the risk of depression). In response to these needs, we created this project to enhance students’ educational success; to educate teachers and schools about these rare diseases so they can provide quality education to students with RD in face-to-face, hybrid, and distance learning modalities; to facilitate the digitalization of teaching by making it more inclusive and adapted; to facilitate synergies between family members, experts, and teachers; and to promote awareness and research on rare diseases.
Objectives
HELP STUDENTS WITH RARE DISEASES, ESPECIALLY DYSTROPHIES AND NEUROMUSCULAR DISEASES TO ACHIEVE EDUCATIONAL SUCCESS.
PROMOTE SCHOOLS ABLE TO OFFER A HIGH QUALITY BLENDED LEARNING TO STUDENTS WITH RARE DISEASES.
FACILITATE SYNERGIES BETWEEN FAMILY MEMBERS, MEDICAL EXPERTS, PEDAGOGUES, AND SCHOOL EDUCATION TEACHERS.
FACILITATE THE DIGITIZATION OF EDUCATION TO MAKE IT MORE INCLUSIVE AND ADAPTED TO THE NEEDS OF STUDENTS WITH BARRIERS.
PROMOTE SOCIAL AWARENESS ON RARE DISEASES AND THE NEED FOR EVERYONE TO CONTRIBUTE TO THEIR RESEARCH.
The first Intellectual Output (IO1) of the project is the Methodological Guide «INCLUSION AND EQUITY IN SCHOOLS: DIGITAL METHODOLOGICAL GUIDE FOR THE INCLUSION OF YOUTH WITH NEUROMUSCULAR DISEASES, MUSCULAR DYSTROPHIES, AND OTHER RARE DISEASES IN EDUCATION», which aims to help teachers to include students under these conditions in the school context, and provide guidance to the students and their families.
The second Intellectual Output (IO2) consists of Digital Open Educational Resources (OERs) titled «FACING MUSCULAR DYSTROPHIES AND OTHER RARE DISEASES IN SCHOOLS: OERs FOR PARENTS, STUDENTS, AND TEACHERS», comprising three modules of activities (for teachers, students, and family members), each containing 20 activities. These resources have been generated by experts, teachers, and the students themselves facing challenges, aiming to facilitate: the teaching action of teachers, the support role of family members, and the improvement of the students’ confidence.
Additionally, we have developed three tangible outcomes: RT1 – «GUIDE OF TESTIMONIES AND EXPERIENCES», which gathers the experiences and pilot tests carried out; RT2 – «TEACHER AND PARENTS ADVISORY SERVICE», where both parties can consult experts on rare diseases; RT3 – «EUROPEAN AWARENESS CAMPAIGN» on social media and the internet; and RT4 – «THE PROJECT’S WEBSITE».
ROME, ITALY – 24/10/2022
On October 24, 2022, we held the first Transnational Meeting of the Project «THE VALUE OF FACING SCHOOL: THE INCLUSION OF YOUTH WITH NEUROMUSCULAR DISEASES, MUSCULAR DYSTROPHIES, AND OTHER RARE DISEASES IN THE EDUCATIONAL SYSTEM» in Rome, Italy, at Fondazione Telethon Italia office (one of the collaborating entities that strongly supports rare disease research in Italy and Europe). The meeting was moderated by Carlos Alonso from FUNDACIÓN ISABEL GEMIO, representing the coordinating organization of the project, and it involved the participation of members from the other partner entities. After the meeting, all attendees had the opportunity to strengthen relationships during an informal lunch.
BARCELONA, SPAIN – 23/01/2023
The partners of the Erasmus+ Project «THE VALUE OF FACING SCHOOL: THE INCLUSION OF YOUTH WITH NEUROMUSCULAR DISEASES, MUSCULAR DYSTROPHIES, AND OTHER RARE DISEASES IN THE EDUCATIONAL SYSTEM» held this second Transnational Meeting on January 23, 2023, in Barcelona, Spain, at the offices of the ASEM Federation. Once again, the meeting was led by Fundación Isabel Gemio. The partnership entitites met to analyse the development of the intellectual outputs and to plan the following dissemination and evaluation activities of the project.
ÉVORA, PORTUGAL – 10/10/2023
On October 10, 2023, the third Transnational Meeting of the Erasmus+ project «THE VALUE OF FACING SCHOOL» took place in Évora, Portugal, once again presented by Carlos Alonso (FIG) as the representative of the project coordinator. The objective of this meeting was to analyze the development of the intellectual outputs and to plan the subsequent phases and activities for dissemination and evaluation.
MÁLAGA, SPAIN – 17/11/2023
The partnership of the Erasmus+ project «THE VALUE OF FACING SCHOOL», co-financed by the European Union, gathered in Málaga, Spain, at the CEIP CLARA CAMPOAMOR school on November 17, 2023, for the fourth and final Transnational Meeting of the project. The partnership also conducted a pilot test of the main outcomes. The partners analyzed the project’s progress up to this point and plan the dissemination activities that would be carried out in the final stage of the project.
The project had a significant impact on across different areas, especially for STUDENTS WITH MUSCULAR DYSTROPHIES AND/OR OTHER RARE DISEASES, who have substantially improved their inclusion in the classroom and enhanced their educational success. We have provided teachers and the educational community tools that help them to implement effective methods to work with these students (who, due to their conditions, often have reduced study opportunities or even access to school) through strategies, professional knowledge, and specific resources.
In addition to these young people with rare and neuromuscular diseases and dystrophies, we have also had a very positive impact on: the PARTNER ENTITIES of the project, who have improved their working capabilities and daily practices; the TEACHERS AND EDUCATIONAL CENTERS involved, who now have access to our innovative teaching methods; the PEERS in inclusive classrooms, even when they do not suffer any of the conditions mentioned, they have enhanced their solidarity and have become more digitally competent, with increased adaptability and guarantees of success in the digital era; and finally, the FAMILIES of these students, who now know how to effectively and collaboratively contribute to their children’s educational success alongside teachers.
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