The partnership of the Erasmus+ project EDUCATIONAL AID KITS IN THE FIELD OF RARE DISEASES, co-funded by the European Union, met on Thursday, June 27, to analyse the progress of the project and plan the following steps.

The initiative will provide training and resources to teachers and students of Vocational Educational Training in the field of Rare Diseases. The Educational Aid Kits will focus on pathologies such as SYSTEMIC RARE DISEASES, that affect multiple organs or systems in the body and are characterized by their low prevalence in the population; RARE ENDOCRINE DISEASES, that imply inappropriate hormonal activity, hormone resistance, tumor growth in endocrine organs, or diseases with consequences for the endocrine system; and NEUROLOGIC DISEASES: also known as neurological disorders, which are medical conditions that affect the nervous system, which includes the brain, spinal cord, and nerves. We will also offer counseling and guidance in the treatment of undiagnosed people.

During the meeting, the partnership also presented the visual image of the project that aims to represent the necessity of great and valuable ideas to foster the inclusion and accessibility of people affected by rare diseases in all educational levels.

The partnership of the initiative, co-funded by the European Union, will meet again in September to continue working on the project results.

The partnership of the Erasmus+ project EDUCATIONAL AID KITS IN THE FIELD OF RARE DISEASES, co-funded by the European Union, met last Friday, May 31, at the headquarters of Fundación Isabel Gemio in Madrid.

According to the study ‘Rare Disease Education in Europe: Time to Act’ carried out by Orphanet Journal of Rare Diseases and published in 2022, healthcare workforce (HWF) lacks even the basic knowledge and awareness of Rare Diseases (RD). In several studies, an objective evaluation of knowledge on RD among physicians (general practitioners and specialists), pharmacists, nurses and students of various specialties was performed by asking questions about RD definition, epidemiology, examples of RD and informational resources for RD. The vast majority of general practitioners (GPs) and students self-rated poorly their knowledge on RD and preparedness to provide care for RD, while self-ratings of pediatricians and specialists were higher.

Therefore, the Erasmus+ project partnership will develop a set of intellectual outputs to improve the training of teachers and students in the Vocational Education Training (VET) fields of Health, Social Integration, and Socio-Sports Education. At the same time, the initiative aims to enhance the inclusion and accessibility of people affected by rare diseases in this education level. A study conducted in Spain for the 2019/2020 academic year indicates that students with disabilities represent only 2.7% of those enrolled at VET. During the meeting, the partners analyzed the situation in the various countries involved in the initiative (Italy, Portugal, France, and Croatia) and agreed on the next stages of the project.

We would like to thank the company SECOE because they have decided to join and collaborate with Fundación Isabel Gemio once again providing in solidarity the catering that the partnership enjoyed at the end of the meeting. Thanks to SECOE’s team, with special mention to Raúl, Carlos, and Julián, for their professionalism and kindness at all times.

After lunch, the project’s partnership went to the VET centre Colegio Internacional G. Nicoli in Madrid to gain first-hand insight into the perspective of teachers from the Vocational Education Training programs for Nursing Assistant Technician, Natural Environment and Outside Activities Guide and Sports Education and Social Animation Technician. This school advocates for the rights of people with disabilities for years. and its curriculum includes sessions focused on the research and understanding of Rare Diseases.

We would like to thank the Colegio Internacional G. Nicoli for their collaboration and, special thanks to Itziar, Ruth, and Paloma, as their testimony has allowed us to identify the needs and main challenges that we must address within this project.

The partnership (Universidade de Évora, Rare Diseases Croatia, CESIE ETS, Federación ASEM, CMT-France and Fundación Isabel Gemio) will continue working in the following months with the aim of improving the inclusion of people with rare diseases in VET and raising social awareness about these pathologies.

On Tuesday, April 23^rd, we held the kick-off meeting of the Erasmus+ EDUCATIONAL AID KITS IN THE FIELD OF RARE DISEASES (RD). The objectives of this new project are:

• transform vocational training into a more accessible and inclusive education for people with RD that encourages them to carry out their studies in equity.
• train future professionals without RD in the care of this target group, avoiding risks and negligence due to lack of knowledge of RD and opening new paths to employability.
• establish an innovative working strategy between RD experts and VET teachers that allows them to include content related to RD and inclusive methods in their classrooms.

In this new initiative, co-funded by the European Union, and coordinated by Fundación Isabel Gemio, the partnership organizations are Universidade de Évora (Portugal), CESIE ETS (Italy), CMT-France (France) and Federación Española de Enfermedades Neuromusculares (Spain). The partnership will collaborare in the development of the following results:

• METHODOLOGICAL GUIDE. An extensive guide that will establish mechanisms to promote the creation of more inclusive VET classrooms with RD students, as well as to establish methods to deal with training contents on RD compatible with their teaching curricula and their didactic programming.
• EDUCATIONAL KITS. Sets of educational materials that allow teachers to use them in their classrooms to enhance the training of mid-level vocational students from the professional families of health and socio-cultural and community services.
• VIRTUAL COURSE.  For the training of vet teachers in the use of resources and methodology through adapted digital tools.
• ADVICE AND GUIDANCE SERVICE. A communication tool that will put teachers or professionals with intermediate vocational training studies in contact with experts from various fields in RD so that they can help them with the mechanisms to properly care for patients with RD.

The partnership of the project will meet in Madrid next month to discuss and plan the following steps of the project.

On February 16^th, 2024, the partners of the Erasmus+ project QUALITY YOUTH MENTORING FOR INCLUSION met in Rome to hold the second transnational meeting of the project. The main objective of the meeting was to review the progress of the intellectual outputs and to develop the dissemination plan.

The partners have identified that the mentoring process for people affected by rare diseases will have three main beneficiaries:

• The affected people, who will develop their self-determination skills as well as their social and professional capacities.
• The institutions implementing the project, which will be able to create an inclusive working environment and to connect with individuals of unique skills, perspectives, and experiences.
• Parents/caregivers will benefit from the increased autonomy of the youth and a reduction in stress due to additional support from the mentor.

The project will also develop a training process for mentors that will provide them with tools and resources to guide the younger brother and help them achieve the goals and objectives established at the beginning of the project. Over the next few months, we will gather testimonials from people affected and we will carry out dissemination activities to raise awareness among people and the beneficiaries can proceed with the registration on the online platform.

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