Celebrating Rare Disease Day 2025

Today, 28 February 2025, we join the global rare disease community in celebrating Rare Disease Day, a vital occasion to raise awareness, advocate for equity, and celebrate progress in rare disease care.

At ERN eUROGEN, we remain committed to improving diagnosis, treatment, and quality of life for patients with rare and complex uro-recto-genital conditions across Europe. Collaboration is key, and through our network, we continue to enhance patient pathways, share specialist knowledge, and drive innovation in treatment options.

Rare Disease Day is not just a moment to reflect but a call to action. By working together—patients, healthcare professionals, researchers, and policymakers—we can build a stronger, more inclusive future for those living with rare conditions. Let’s continue to raise awareness, share knowledge, and drive change.

New EC Publications for Rare Disease Day 2025

For Rare Disease Day 2025, DG Health and Food Safety at the European Commission have produced a new booklet celebrating the dedication and expertise of the ERNs, which make a tangible difference to the lives of patients with rare diseases and their families. The booklet is available in EN, with other languages available in the following weeks:

• European Reference Networks. A success story for patients living with a rare disease

Two new factsheets (available in EN/FR/DE/IT) also cover how the EC works on rare diseases and the ERNs and how the EU delivers on rare diseases for patients and their families:

• How the European Commission works on Rare Diseases and the European Reference Networks (ERNs) 
• EU delivering on rare diseases for patients and families