May 2016 – EPF Youth Group: Preparing Patient Advocacy for Tomorrow!


The EPF Youth Group plays an important role in the advocacy work of EPF, and central to our Youth Strategy. Here is what happened in 2016.

The group – composed of young patients representing a wide range of chronic conditions and nationalities – aims to sensitise civil society and policy-makers about the consequences of living as a young person with a chronic condition.

Two new patient advocates joined the Group in 2016: Anna Zaghi, a young Italian who lives with Multiple Sclerosis, and Laura Arnout, an 18-year old from Belgium living with asthma.

As always, our young representatives have been very active, participating in conferences, youth camps and other advocacy activities.
In March, the Youth Group conducted a roundtable on transition from paediatric to adult care.The objectives were to raise awareness of the challenges and potential pitfalls that young patients face when transitioning to adult care, to contribute to building a safe support network and to highlight best healthcare practices for the transition process. 

2016 was also an opportunity to share their first-hand testimonials about the discrimination that young people living with chronic conditions frequently face when accessing education, healthcare, and employment. In this regard, in May, youth leaders from EPF and European Multiple Sclerosis Platform (EMSP) co-hosted a workshop at the European Youth Event (EYE) in Strasbourg. EntitledYoung Patients: Ready, Brilliant and Able to Work!’, the workshop aimed to raise awareness of the importance of employment for young people with chronic conditions and to promote workplace adjustments.

The 2016 annual Youth Group Meeting was held in 9-11 September in Utrecht, the Netherlands. The group had a full agenda and got the chance to report back on their advocacy activities from the previous months, restructure the roles and responsibilities with the group, brainstorm to generate ideas for their work plan for the upcoming year, and also to have some fun by participating in an “Escape Room” teambuilding exercise.

To know more about the EPF Youth Group and its activities, visit its webpage.

Contact: Valentina Strammiello, Programme Officer, or