On 28 February 2026, the rare disease community comes together to mark Rare Disease Day — a global movement to raise awareness and drive change for the 300 million people worldwide living with a rare condition.
This year, six members of the ERN eUROGEN European Patient Advocacy Group (ePAG) have contributed their personal stories to the Joint Action on Integration of ERNs into National Health Systems (JARDIN) Rare Disease Day 2026 campaign.
Through powerful first-hand accounts, Kate, John, Lieke, Frans, Anna, and Dalia share what it truly means to live with a rare uro-recto-genital condition; from delayed diagnosis and fragmented care to the importance of specialist expertise, cross-border collaboration, and patient partnership.
Their stories highlight why European Reference Networks exist:
- To connect expertise across borders
- To reduce inequalities in access to care
- To ensure patients are not left navigating complex systems alone
ERN eUROGEN is incredibly proud of our ePAG members. Their willingness to speak openly about their experiences strengthens advocacy efforts at both the European and national levels. Personal stories cut through policy language – they make the case for sustainable integration of ERNs into national health systems in a way statistics alone never can.
We encourage you to read and share their stories:
