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

/in

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”

/in ,

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

/in , ,

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

/in , ,

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

/in , ,

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.