Fundación Isabel Gemio holds a multiplier event of the Erasmus+ MENTORING FOR INCLUSION Programme at the Representation of the European Commission in Spain

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Madrid, 11 November 2024.   Fundación Isabel Gemio has held the multiplier event of the Erasmus+ QUALITY YOUTH MENTORING FOR INCLUSION project, co-funded by the European Union, in Madrid, at the Representation of the European Commission in Spain. The main objective of this project is to establish and consolidate a European network called QUALITY YOUTH MENTORING FOR INCLUSION composed of national organisations from different EU Member States in the field of rare diseases. This project promotes the empowerment of young people and children affected by rare diseases with similar barriers across Europe.

The mentoring programme seeks a relational encounter between mentor and mentee through a process of getting to know each other through different phases. In this way, the mentor will act as a ‘big brother’ offering skills and techniques that allow the mentee to become aware of his/her strengths and priorities and be able to improve his/her resilience and emotional management. Therefore, active listening, emotional intelligence and empathy are three fundamental pillars of this programme.

During the first part of the event, Ana Río Quintana, as representative of the European Commission in Spain, presented the European commitment to improve access to diagnosis, healthcare and projects aimed at improving the quality of life of people with rare diseases. Similarly, María Romo, Director of the Isabel Gemio Foundation, highlighted the Foundation’s track record, which has already coordinated five European projects, and the results obtained thanks to this funding. The director of the ASEM Federation, Begoña Martín, reflected on the importance of also supporting families as a vital support.

In the second part, the mentors Eva Díaz, Antonio Maldonado and Mikel Villanueva spoke about their experiences of the mentoring programme, as well as the main challenges and personal learning experienced. Also present at the event were staff from different social entities and professionals from the fields of mentoring, psychology and education, patient associations and affected people and their families. The event ended with a series of questions that enriched the debate.

From the Foundation we would like to thank all the attendees, the European Commission Representation Office in Spain for hosting us and the Caixabank volunteers who helped us in the development of the event.

We reunite mentors and mentees of the Erasmus+ QUALITY YOUTH MENTORING FOR INCLUSION for a final evaluation event

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This week, Fundación Isabel Gemio held the final evaluation event for the pilot tests of the Erasmus+ QUALITY YOUTH MENTORING FOR INCLUSION project. The aim was to bring together mentors and mentees to share experiences and gather their feedback on the mentoring process they participated in during the summer months. The pilot tests, carried out simultaneously in Spain, Italy, Cyprus, and Croatia, allowed us to identify the strengths of the process designed by the partnership and improve its results.

During the online event, both mentors and mentees emphasized that it was an enriching initiative that allowed them to connect with people in similar situations and, at the same time, learn new ways of facing reality. Participants also mentioned that they had developed their empathy, improved their communication skills, and applied new mechanisms to overcome daily challenges. “Beyond our illness, we were able to meet people with similar interests and hobbies. A great initiative to meet people and make new friends,” said one of the mentors. “This experience has allowed me to relive my youth and has filled me with life,” summarized another participant. “I believe the initiative is a learning experience for both mentors and mentees,” they added.

Additionally, the event featured the participation of Carolina Navalón, vice president of the Asociación de Artrogriposis Múltiple Congénita España and the first woman with a disability currently competing in Spain in the Stand Up Paddle (SUP) Race category. Carolina shared with mentors and mentees the results of the ‘Blue Soler Therapeutic SUP’ project, the first international clinical study to evaluate the benefits of Stand-Up Paddle for people with some degree of disability or disabling disease and musculoskeletal disorder.

We would like to thank all participants for their interest in the initiative, their kindness and availability always, as well as their empathy and eagerness to help.

If you would like to participate in the Erasmus+ QUALITY YOUTH MENTORING FOR INCLUSION, you can contact us at:

¡Join us!

The partnership meets in Cyprus for the third and last transnational meeting of the Erasmus+ QUALITY YOUTH MENTORING FOR INCLUSION

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The partnership of the Erasmus+ project QUALITY YOUTH MENTORING FOR INCLUSION, co-funded by the European Union, hold the third and last transnational meeting of the project in Nicosia (Cyprus) on Monday, September 23rd, 2024. The objective of the meeting was to analyse the conclusions drawn from the pilot tests conducted in the different countries involved in the initiative and to plan the following dissemination activities and multiplier events.

According to the final evaluation forms, most of the participants feel satisfied or very satisfied with the mentoring process. They also assert that they have experienced a significant or highly significant personal growth and development through the whole process. Among their testimonies, we find people that would repeat the initiative “a thousand times” and that would “love to meet more children with similar conditions”. Others assert that the mentoring process has been “a great experience and a very beautiful personal enrichment”. The partnership will now implement these conclusions to the intellectual outputs of the project to improve the results.

Before the meeting, the representatives of the different partnership entities visited the Karaiskakio Foundation, a nonprofit organization set in Cyprus that combines volunteering and specialized scientific support, in order to serve the needs of patients with haematological malignancies and other related disease. Mr. Paul Kosteas, executive director of the Centre for the Study of Haematological Malignancies of the Karaiskakio Foundation, and Mrs. Violeta Christophidou, PhD in Pediatrics and Medical Genetics and founder and first lead of the Clinical Genetics Clinic in Cyprus, guided us through the facilities and introduce us to the different research teams that work in the Bone Marrow Donor Registry and the Cord Blood Registry. We also dedicated some time to discuss the importance of multidisciplinary teams when talking about rare diseases, and the different initiatives developed to raise awareness in society, such as the project “We Care for Rare”.

Thanks to Cyprus Alliance for Rare Disorders and to the Karaiskakio Foundation for hosting a welcoming and enriching meeting!

The parnterhsip of the Erasmus+ EDUCATIONAL AID KITS IN THE FIELD OF RARE DISEASES holds a new online meeting

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On September 18, 2024, the partnership of the Erasmus+ project EDUCATIONAL AID KITS IN THE FIELD OF RARE DISEASES, co-funded by the European Union, held a new online meeting to analyse and monitor the progress of the intellectual outputs.

One of the key priorities of the initiative is to advocate for the rights of  individuals with Rare Diseases (RD) and make them a recognisable group alongside, but not the same as individuals with other disabilities, and to explore their specific needs and problems they face in the context of Vocational Education Training (VET). For that matter, the initiative encourages VET schools to implement some of the following initiatives:

  • Offer training courses on supporting people with RD to the VET centre’s teaching staff.
  • Promote Universal Design of Learning (UDL) and accessibility for all people, both in subjects and resources.
  • Elaborate awareness campaigns about RD within the educational community.

In the following weeks the partnership will share testimonies of health professionals, VET teachers, and people affected by RD that will allow us to identify existing challenges, raise awareness, and design solutions for a more inclusive educational environment.

Follow us on social media and keep up on the latest news!

Mentor-mentee relationships begin in the Erasmus+ Project QUALITY YOUTH MENTORING FOR INCLUSION

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In recent weeks, Fundación Isabel Gemio’s team has begun the training and orientation of the participants of the Erasmus+ project QUALITY YOUTH MENTORING FOR INCLUSION, co-funded by the European Union. Mentors and mentees had the opportunity to learn about the activities, objectives, and responsibilities of the process that will allow them to develop personally and professionally.

The initiative, which aims to create a European network of people affected by rare diseases to share experiences and establish trust-based relationships, will enable mentees to develop skills such as empathy, critical thinking, and resilience. Additionally, through practical exercises, young participants will learn methodologies and tools to facilitate problem-solving and decision-making. Mentors, in turn, will be able to share their knowledge and become agents of change and role models for the mentees.

Would you like to participate?

Contact us through social media, and we will find the mentor or mentee that best suits their needs. You can also contact us by:

  • Phone: +34 911 103 158
  • E-mail: comunicaeuropa@fundacionisabelgemio.com

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.