The partnership of the Erasmus+ KITS EDUCATIVOS EN EL ÁMBITO DE LAS ENFERMEDADES RARAS meets in Madrid

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.