Disponible la Memoria 2023 de la Fundación Isabel Gemio

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Descubre la MEMORIA ANUAL 2023 de la Fundación Isabel Gemio y conoce a nuestro patronato, equipo de trabajo y proyectos de investigación científica para combatir las enfermedades poco frecuentes. La memoria también recoge todos nuestros eventos, actividades y proyectos europeos desarrollados para mejorar la inclusión y la accesibilidad y concienciar a la sociedad sobre estas patologías. Además, incluimos información detallada sobre nuestras alianzas, redes de colaboración y premios recibidos.

¿Quieres sumarte a nuestra lucha?

COLABORA

New online meeting of the Erasmus+ EDUCATIONAL AID KITS IN THE FIELD OF RARE DISEASES

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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.

New online meeting of the Erasmus+ QUALITY YOUTH MENTORING FOR INCLUSION

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On Thursday, June 13th, the partnership of the Erasmus+ QUALITY YOUTH MENTORING FOR INCLSUION, co-funded by the European Union, held a new online meeting to analyze the development of the main results, to organize the pilot test and to agree on a date for the 3rd transnational meeting of the project in Nicosia (Cyprus).

Entities with an inclusion and accessible environment will be able to implement the mentoring process in their work methodology, something that can bring numerous benefits. The people will be more satisfied, as it improves those qualities in them that are most valuable for professionals.  Some of the benefits for the implementation of the program are:

  • Strengthening leadership, in line with strategic objectives
  • Promotion of an action policy focused on achieving objectives
  • Identifying, retaining and directing talent towards specific projects
  • Increasing loyalty and enhancing internal communication
  • Facilitating the transmission of the institution’s values and organizational culture.

The partnership will start the pilot test of the initiative in the following months aiming to test the results and enhance the outcomes. For that matter, we will conduct 6 different mentoring relationships between big brother and younger brothers. We are looking for apprentices willing to accelerate their  individual, educational and professional development; and mentors willing to encourage social inclusion, solidarity and tolerance.

Do you want to join us? Contact us.

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

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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.