Young people living with inherited lipid conditions and rare diseases bring a unique perspective to healthcare, research and policy. They understand first-hand the realities of growing up with a chronic condition, navigating healthcare systems, managing treatment, balancing education or work, and planning for the future.
For many years, patient organisations have worked hard to ensure that the patient voice is heard. However, there are still too few opportunities specifically designed for young advocates to contribute their experiences, build skills and develop leadership networks. This is why the EPF Youth Congress 2026 is such an important milestone.
The Congress recognises that young people are not simply beneficiaries of healthcare policy. They are partners in shaping it. By bringing together young patient advocates, policymakers, researchers and healthcare professionals, the event creates a space where ideas can be exchanged, partnerships can be formed, and future leaders can emerge.
For the FH Europe Foundation community, this aligns closely with our commitment to empowering people affected by inherited lipid conditions, especially familial hypercholesterolaemia (HeFH and HoFH), elevated lipoprotein(a), FCS, and severe hypertriglyceridaemia. We know that meaningful change happens when people with lived experience are involved in discussions about research, education, awareness and policy.
Youth engagement is not just about representation. It is about creating opportunities for young people to grow their confidence, expand their networks and develop the skills needed to become effective advocates. These experiences often lead to greater involvement in patient organisations, research projects, advisory boards and policy initiatives. Many of the partnerships and collaborations that strengthen our community today started with a simple introduction, a conversation at an event, or a willingness to volunteer. That is why we are committed to helping young people connect with organisations and networks across Europe.
If you are interested in patient advocacy, healthcare policy, research, awareness raising, communications or community building, now is the perfect time to get involved. Whether you are already active in a patient organisation or taking your first steps into advocacy, there are opportunities to learn, contribute and make your voice heard.
Through our partnerships and networks, we can help introduce you to organisations, initiatives and opportunities that match your interests. We are also continuing to develop our own youth engagement activities and build a stronger youth community within FH Europe Foundation.
We are looking for enthusiastic young people who want to:
Your experience matters. Your insight matters. Your voice matters.
Join us in building a stronger, more connected and more empowered community of young advocates across Europe.
Interested? Contact elsie@fheurope.org and start the conversation today.
Written by Elsie Evans