Erasmus+ project ‘Quality Youth Mentoring for Inclusion’ showcases its results in Multiplier Events across Europe

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In recent weeks, the partners of the Erasmus+ project ‘Quality Youth Mentoring for Inclusion’, co-funded by the European Union, have organized several multiplier events to present the main outcomes of the initiative:

  • On Wednesday, December 11, Parent Project held the multiplier event at the headquarters of the UILDM – Unione Italiana Lotta alla Distrofia Muscolare in Legnano, in the province of Milan, with the collaboration of UILDM’s Legnano and Lecco sections. Vittorio Montixi, an educator and project operator for Parent Project, led the meeting. Initially, an overview of the project was presented, followed by a role-playing activity where participants personally experienced the project’s dynamics.
  • On Tuesday, December 17, Rare Diseases Croatia hosted the multiplier event at the Youth Health Center in Zagreb. During the event, they explained that the mentoring program aims to establish a relational connection between the mentor and the mentee through a mutual understanding process that unfolds in different stages. In this way, the mentor acts as a “big brother,” offering skills and techniques to help the mentee become aware of their strengths and priorities, thereby enhancing their resilience and emotional management.
  • Also on Tuesday, December 17, the Cyprus Alliance for Rare Disorders organized its multiplier event at its offices in Nicosia, specifically at the Folea Center. During the event, they highlighted that the initiative has created a European network for young people affected by rare diseases, aiming to improve their resilience, emotional management, and self-confidence.

The purpose of these events has been to raise awareness about the project and to share its insights with interested stakeholders, such as youth organizations, educators, and entities working in the field of inclusion, to encourage the adoption of this mentoring model in various contexts.

Many thanks to all the people who have shown interest in the Erasmus+ project ‘Quality Youth Mentoring for Inclusion’. We continue working!

NEW ONLINE MEETING OF THE ERASMUS+ EDUCATIONAL AID KITS IN THE FIELD OF RARE DISEASES

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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.

Fundación Isabel Gemio and the partnership of the Erasmus+ ‘Quality Youth Mentoring for Inclusion’ launch the network ‘You’re Not Alone’

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Madrid, December 16th, 2024. Fundación Isabel Gemio presented this Monday the network ‘You’re Not Alone’ as part of the Erasmus+ project ‘Quality Youth Mentoring for Inclusion’, co-financed by the European Union. The presentation took place in the auditorium of the Colegio Internacional G. Nicoli, a venue that welcomed representatives of national and international organizations, mentors and project participants, as well as a large group of VET students.

The network was established with three main goals:

  • To promote investment in research on rare diseases.
  • To foster the inclusion and participation of young people with rare diseases.
  • To become a recognized advisor on rare diseases.

The network also benefits from the participation of prestigious organizations such as Parent Project APS (Italy), Rare Diseases Croatia (Croatia), and Cyprus Alliance for Rare Disorders (Cyprus). These entities bring their expertise in the field of rare diseases and social inclusion, ensuring a multidisciplinary and global perspective. During the event, the achievements of the Erasmus+ project were also highlighted, particularly its success in facilitating the development of a high-quality youth mentoring model.

Later, the audience had the opportunity to hear testimonials from Antonio Maldonado, Marta Arriero, Laura Sánchez, and Marina Toro, who shared their experiences within the mentoring process. Each of them spoke about the benefits of the initiative and emphasized the need for role models in the field of rare diseases.

Fundación Isabel Gemio once again reaffirms its commitment to research and inclusion. In the coming months, the ‘You’re Not Alone’ network aims to expand its reach by incorporating new organizations and developing activities to strengthen its impact across Europe.

We invite you to the launch of the You’re Not Alone network for rare diseases

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Next Monday, 16 December, the Isabel Gemio Foundation will present the network ‘You’re Not Alone’ as part of the Erasmus+ project ‘Quality Youth Mentoring for Inclusion’, co-funded by the European Union. The network is made up of national and international organisations and has the following objectives:

  1. Encourage investment in rare disease research: Promote and support initiatives that boost the funding and development of scientific studies, clinical trials and research programmes that improve the knowledge, treatment and care of RD.
  2. Promote the inclusion and participation of young people with rare diseases: Implement the project ‘Quality Youth Mentoring for Inclusion’ aimed at creating mentoring programmes that facilitate the social, educational and labour inclusion of young people affected by RD, ensuring their full participation in society.
  3. Become a recognised advisor on rare diseases: To strengthen the network’s capacity to provide expert advice to national governments and European institutions on rare diseases, influencing the development of public policies and health and social care strategies.

We invite social organisations, organisations in the field of mentoring and education, researchers and scientists, as well as members of the public administration, to join us and join our network. Access is free of charge until full capacity is reached. You can register on the following link:

https://www.eventbrite.es/e/entradas-presentacion-de-la-red-youre-not-alone-1097964253639?aff=oddtdtcreator

The event will take place on

  • 16th of December
  • 12:00 to 14:00 hours
  • Colegio Internacional G. Nicoli (P.º de Eduardo Dato, 4, 28010, Madrid)

We are waiting for you!

NOTICIA DE ONDA REGIONAL: Encarna Guillén. “Queremos crear una plataforma federada de datos que esté disponible para trabajar con las enfermedades raras”

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La Dra. Encarna Guillén, exjefa de la sección pediátrica de La Arrixaca y actual líder del programa Únicas del Hospital de San Joan de Déu (Barcelona) de atención a niños con enfermedades raras, se muestra especialmente comprometida con la mejora de la atención y el tratamiento hacia estos pacientes. Esta iniciativa, conformada por una treintena de centros hospitalarios en España, pretende facilitar la información de más de siete mil enfermedades raras con el propósito de mejorar el diagnóstico y la entrada a terapias más evolucionadas. Si bien el proyecto se inicia con enfermedades raras pediátricas, este pretende expandirse a otros ámbitos y sectores de la medicina mediante la consolidación de equipos interdisciplinares.

Fuente: madrimasd

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

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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.


Fundación Isabel Gemio coordinates new mentorship relationships under the Erasmus+ Quality Youth Mentoring for Inclusion

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This week, Fundación Isabel Gemio held several training sessions for mentors and mentees to initiate new mentoring relationships as part of the Erasmus+ program QUALITY YOUTH MENTORING FOR INCLUSION, a project co-financed by the European Union.

Following the pilot tests conducted over the summer, the new mentors and mentees will begin their relationships using the improvements implemented thanks to the valuable experiences and practices shared by previous participants.

The project’s main goal is to create a European network of young people affected by rare or minority diseases, providing a space for personal and social growth. Through these mentorships, participants work on strengthening their confidence and self-esteem, recognizing their own strengths, and acquiring tools to set clear goals and effectively prioritize tasks.

In this way, Fundación Isabel Gemio reaffirms its commitment to inclusion and the empowerment of young people, with special focus on those affected by rare diseases.

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!