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.

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

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The partnership of the Erasmus+ QUALITY YOUTH MENTORING FOR INCLUSION met on Tuesday, April 30th, to analyze the progress of the initiative, that will develop a mentoring process for young people affected by Rare Diseases (RD). Find below the most important conclusions of the meeting:

  • The methodological guide will provide training for mentors and mentees that will improve their confidence and self-development.
  • The mentoring process will allow the participants to identify future professional development opportunities and to learn techniques to overcome daily challenges.
  • More than 60 young patients affected by RD will benefit directly from the initiative. The pilot tests will be conducted during the summertime to increase the participation of young people.

Do you want to join us? Contact us and we will guide through all the process. Follow us on social media for more information.

Kick-off meeting of the Erasmus+ EDUCATIONAL AID KITS IN THE FIELD OF RARE DISEASES

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On Tuesday, April 23rd, 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.

Roma receives the second transnational meeting of the Erasmus+ QUALITY YOUTH MENTORING FOR INCLUSION

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On February 16th, 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.

Follow us on social media and stay updated with all the latest news!

The partnership of the Erasmus+ QUALITY YOUTH MENTORING FOR INCLUSION holds a new online meeting

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The partners of the Erasmus+ QUALITY YOUTH MENTORING FOR INCLUSION met this Tuesday, February 6th 2024, to review the progress of the project and plan the next activities.

The project is going to create a digital platform that will allow young people with rare diseases (RD) to request an older brother or apply to become one. This platform will connect the young person with their older or younger brother and with the rare disease entity in their country.

What qualities define a good mentor?

  • Be supportive and positive.
  • Listen carefully and show interest in the mentee’s experiences and needs.
  • Be honest and authentic.
  • Create a safe space for sharing thoughts, feelings, and making mistakes.
  • Encourage the mentee to explore their strengths and abilities.

If you want to be part of the Project, please contact us, and we will provide you with all the information.The Erasmus+ project QUALITY YOUTH MENTORING FOR INCLUSION is cofounded by the European Union.

Partners:

  • Federación Española de Enfermedades Neuromusculares (ASEM)
  • Parent Project aps
  • Rare Diseases Croatia
  • Cyprus Alliance for Rare Disorders

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

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On Thursday, November 23rd, the partnership of the Erasmus+ QUALITY YOUTH MENTORING FOR INCLSUION, co-funded by the European Union, held a new online meeting to analyze and monitor the progress of the intellectual outputs.

The partnership has already decided the contents of the methodological guide that will help organizations and institutions to implement the mentoring process. This document will also provide useful information, activities and resources for big and younger brothers to establish a relationship of mutual trust and comprehension. It was also agreed that, next year, the partnership will launch a multimedia viral campaign to increase the impact of the initiative.

The ultimate goal of the project is to create a network of national rare disease organisations to design and implement an empowerment strategy for young people living with barriers to become mentors and big brothers to other young people and children experiencing the same barriers from all over Europe.

The partnership will meet again in February, in Rome, to continue working on the results and to plan the structure and design of the online platform BIG BROTHER FOR INCLUSION, a digital a tool for young people with RD to apply for a big brother or apply to become one.

We will keep you informed of everything. ¡Follow us on social media and don’t miss anything!

We test the results of the Erasmus+ THE VALUE OF FACING SCHOOL with the students of the primary school Clara Campoamor in Málaga

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The partnership of the Erasmus+ THE VALUE OF FACING SCHOOL, co-funded by the European Union, met at the primary school CEIP Clara Campoamor (Málaga), on November 17th, to conduct the pilot test of the project. It was divided into two different groups: 6th grade students (10-11 years) / 2nd (6-7 years old) grade students. Among the students were children affected by rare diseases and neuromuscular dystrophies, as well as other pathologies such as autism. School teachers and parents also participated in the pilot tests.

The partnership explained that the Erasmus+ programme connects professionals from different countries of the European Union aiming to develop initiatives to support education and youth. We also explained that when we talk about rare diseases, the adjective «rare» should be interpreted as «infrequent», because of the low prevalence of individual rare diseases and the large number of existing rare diseases. However, it must be clear, that these pathologies affect more than 30 million of people in Europe.

During the event, we put into practices some of the resources we have developed within the project. We showed them a video of inspiring stories of young people affected by these pathologies as an example of courage and strength. We also did a role play to encourage students to experience the difficulties that these young people must overcome in their daily life.  And we learned to use pictograms for communication, which helped us to understand the importance of using an inclusive language to represent all kinds of people. Besides, we shared with teachers and parents inclusive methodologies and multiple recommendations to benefit digital learning.

We would like to thank you the primary school CEIP Clara Campoamor and all the participants for the kindness and support. All the students, parents and teachers showed a collaborative and willingness attitude.  It was very exciting to finally see the results of the project developed by the partnership working for the inclusion and accessibility of the people affected by rare diseases and neuromuscular dystrophies. All the people interested in the initiative would find more information in the web platform www.faingschool.eu.