On 24 January 2025, the partnership of the Erasmus+ project EDUCATIONAL KITS IN THE FIELD OF RARE DISEASES, cofunded by the European Union, held a new transnational meeting in Barcelona to examine and review the development of the work.

During the meeting, the first draft of the methodological guide that will be available in several languages and the educational kits aimed at achieving a correct inclusion of students affected by rare diseases in Vocational Education and Training (VET) were analyzed.

In addition, at the meeting the partners continued to discuss the next steps to further develop the project’s results and activities.

After the working meeting, the partners had the opportunity to visit some of the magnificent facilities of the Hospital San Joan de Déu with Dr. Josep Serrat, Director of Planning and Management Support.

This was followed by a visit to the Casa de Sofia, led by its founder Dr. Jordi Cruz, the first care centre for children with complex or advanced chronic illnesses in Spain, whose main objective is to avoid hospital admission when it is not strictly necessary, delaying possible long-term hospitalisation as much as possible. La Casa de Sofia also takes in patients after hospital admission, by means of planning that avoids new situations of risk of admission; as well as offering constant accompaniment and therapeutic respite in situations of family overload.

From Fundación Isabel Gemio we would like to thank all the partners and the Pérez-Llorca Law Firm for hosting us and Federación Española de Enfemedades Neuromusculares ASEM as the host of the meeting.

Let’s keep working!

On December 12th, 2024, the partnership of the Erasmus+ project EDUCATIONAL KITS IN THE FIELD OF RARE DISEASES, co-funded by the European Union, held a new online meeting to analyze and monitor the development of the results.

During the meeting, the partnership continued working on the development of the methodological guide and educational kits aimed at achieving a correct inclusion of students affected by rare diseases in Vocational Training (VET). In this way, the project involves different professionals from health, education, social services and sports whose training is essential to develop specific skills to adequately respond to the needs of people affected by rare diseases.

Rare diseases represent a series of obstacles that have a profound impact on the lives of those who suffer from them, including delays in diagnosis, which, on average, can last up to five years. In addition, their chronic and progressive nature negatively impacts on the mobility, autonomy and emotional and economic stability of patients and their families.

During the meeting, the partners continued preparations for the next transnational meeting of the project, which will take place in Barcelona on Friday, January 24th, 2025.

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!