On Thursday, November 7, 2024, the partners of the Erasmus+ project Educational Kits for Rare Diseases, co-funded by the European Union, held a new online meeting. During the meeting, progress was shared on the methodological guide and educational kits designed to enhance the inclusion of students affected by rare diseases in Vocational Education and Training (VET). The initiative also includes training for VET teachers and students in the fields of healthcare, social services, and sports, fostering specific skills to address the needs of individuals affected by these conditions.

Rare diseases present numerous challenges that significantly impact the lives of those affected, including delays in diagnosis, which on average can take up to five years. Furthermore, their chronic and progressive nature affects patients’ mobility, independence, and emotional and financial stability, as well as that of their families. However, these challenges can also strengthen family cohesion and foster greater empathy within social and professional environments.

During the meeting, the partners decided that the second transnational project meeting will take place in Barcelona on Friday, January 24th, 2025. This meeting will allow the partners to assess the project’s progress and continue collaborating to ensure the effectiveness and accessibility of its outcomes.

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.

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 23^rd, 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!

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

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.