Ziek Zeldzaam

Growing up with a rare disease is often a complex, sometimes lonely journey. You encounter limits that others never see. You plan your future in pencil. You learn to live in smaller doses. In Ziek Zeldzaam, The Youth Panel for Rare Diseases at UZ Gent shares unfiltered what it really feels like. They talk about being visibly and invisibly ill. About extreme fatigue. About friendship, love, and future plans marked by uncertainty.

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Being young and living with a rare disease. It’s a life between boundaries and dreams.

In six episodes, they share what they’re up against. What helps. What hurts. What keeps them going. With an important message for their peers: you are not alone.

Made possible with the support of De Warmste Week. For young people with a rare disease. For those who stand beside them. For caregivers and policymakers who are ready to listen.

Together, They Are Many

Young people with rare diseases often don’t know others with the same condition and rarely have access to patient associations. Yet, together, they are many. More than 660,000 Belgians live with a rare disease, including 80,000 young people between the ages of 16 and 25.

At the end of 2024, UZ Gent launched a youth panel, created by and for young people. Together, they share the message that they are not alone. The panel now consists of sixteen young people who determine their own initiatives and projects. Staff from UZ Gent provide structure, assess feasibility with the young people, and support the development of their initiatives.

The youth panel should go beyond the support UZ Gent already provides. We meet four times a year and let the young people take the floor. This way, they’ve already started projects like a podcast and an online practical guide for hospital care.

Janne Suykens - psychologist and researcher at UGent

Around their 18th birthday, young people transition to adult care. This shift is challenging and coincides with major changes in their lives. As healthcare providers, we want to better recognize and support this transition. We let them indicate where healthcare providers and supporters should focus specifically for them.

Karsten Vanden Wyngaert - coordinating staff and policy expert at UZ Gent

At the first meeting, it felt like I finally found a place where I belonged. As the chair of the panel, I want to ensure no one is left behind. With our rare conditions, we don’t fit into standard protocols and have complex medical files. But because we’ve often been sick for so long, we know our bodies and conditions well. It’s definitely worth listening to us, not just in the hospital, but also to policymakers.

Noémie Baert