R1: METHODOLOGICAL GUIDE FOR THE TRAINING AS BIG BROTHER OF YOUNG PEOPLE WITH RARE DISEASES
The «Quality Youth Mentoring for Inclusion» has developed a mentorship program to support young people across Europe who are affected by rare diseases. It seeks to foster a community of mutual support by establishing mentoring relationships between “Big Brothers” (older or more experienced individuals) and “Younger Brothers” (younger mentees or newly diagnosed individuals) who share similar life experiences and challenges. The program’s core objectives include offering emotional support, promoting social inclusion, and encouraging personal growth and advocacy. By connecting individuals who can relate to each other’s rare disease experiences, the program aims to reduce feelings of isolation, provide practical life skills, and empower young people to advocate for themselves and others affected by similar conditions.
PARTS
PART 1: Introduction to rare diseases
In the EU, Rare Diseases are those whose prevalence is below 5 per 10,000 inhabitants. It is estimated that there may be more than 7,000 rare diseases. The 80% has a genetic origin and two thirds manifest themselves before two years old.
PART 2: The role of the institution in the mentoring process
The program aims to create a larger support system that recognizes and addresses the unique needs of young people with rare diseases. This inclusive approach encourages a diverse range of organizations—whether they specialize in rare diseases, mentoring, or have an interest in social impact—to contribute resources, expertise, and perspectives that can enrich the mentorship experience and amplify its reach.
PART 3: Finding and training a good mentor and mentee
This chapter includes a roadmap of the stages, tools and processes to develop and monitor the relationship between big and younger brothers and measure the outcomes. Sharing about illness, and perhaps even more so when sharing about a rare degenerative one and its consequences, is challenging both for the person living with the disease and their families.
PART 4: Become a member of the network you are not alone
By developing a network that harnesses the resources, knowledge, and influence of diverse organizations, the «Quality Youth Mentoring for Inclusion» initiative envisions a future where young people affected by rare diseases receive holistic support, and where rare diseases are met with the research, awareness, and advocacy they deserve. Through collaborative, cross-sector efforts, this network aims to build a lasting, impactful movement that addresses both the immediate and long-term needs of the rare disease community.
PART 5: Becoming a Big Brother
To help mentors navigate throughout their role as easily as possible, in this chapter we presented some skills, strategies and tips which mentors could find helpful in the mentoring process.
PART 6: Becoming a Younger Brother
To help mentees navigate throughout their role as easily as possible, in this chapter we presented some skills, strategies and tips which mentees could find helpful in the mentoring process.
PART 7: The mentoring process
The program’s mentoring process promotes steady growth, building a trusting relationship that empowers the mentee to develop greater confidence and resilience within a structured, supportive framework.
QUALITY YOUTH MENTORING FOR INCLUSION
The Erasmus+ project is co-funded by the European Union.
The European Commission support for the production of this publication does not constitute an endorsement of the contents which reflects the views only of the authors, and the Commission cannot be held responsible for any use which may be made of the information contained therein. This publication is available in Open Access under Creative Commons license, under the conditions: Attribution-Non Commercial-Share alike (by-nc-sa) license. By using the content of this publication, the users accept to be bound by the terms of use of the ERASMUS PLUS.
