Strengthening youth involvement in patient organisations
How can patient organisations meaningfully involve young patients — not just as participants, but as partners, contributors, and future leaders?
The Youth Involvement in Patient Organisations course, developed by the Youth Group of the European Patients’ Forum, is a free, self-paced online training designed to support patient organisation leaders, staff, and volunteers in finding, engaging, and sustainably involving young patients in their organisations.
The course responds to a clear need identified across EPF members: while many organisations recognise the value of youth involvement and motivation is often high, patient organisation leaders often encounter many hurdles to ensure meaningful long-term inclusion of young patient advocates in their organisation.
Why is this course important?
Involving young patients brings clear benefits — both for patient organisations and for young people themselves.
Many young patients are already active advocates, often working independently and outside of patient organisations. At the same time, within an ageing population, patient organisations need to invest in and support young patient advocates to ensure future leadership and long-term sustainability.
This course will guide patient organisation leaders through the challenges of involving young patients, helping them understand how to navigate and address them in practice.
Through the course, they will explore how meaningful youth involvement can strengthen their organisation in a sustainable way. They will gain insights directly from young patient advocates and receive practical guidance on how to improve youth involvement within their own organisation
What will you learn in this course?
The main objective of the course is to support patient organisations in building meaningful, non-tokenistic and sustainable youth involvement.
By the end of the course, patient organisation leaders will be able to:
- Better understand why youth involvement matters for strong and representative patient organisations
- Identify different levels and models of youth involvement, from consultation to shared decision-making
- Learn how to find, connect with and retain young patients
- Create a more supportive, inclusive and flexible organisational environment for young patients
- Strengthen intergenerational collaboration and knowledge exchange
- Develop or refine a youth strategy tailored to your organisation
Who is this course for?
This course is designed primarily for:
- Leaders, board members, and staff of patient organisations
- Volunteers and coordinators working with young patients
- Patient organisations that already involve young people and want to improve their approach
- Patient organisations that do not yet involve young patients but want to start in a structured and sustainable way
While the course focuses on organisational leadership, young patient representatives may also benefit, particularly those involved in governance or youth structures.