VASCERN Marks Rare Disease Day 2025

This year, for Rare Disease Day 2025, VASCERN joined forces with all European Reference Networks (ERNs) to deliver a unified message of hope and action for the rare disease community.

Through a series of carefully crafted social media posts, multilingual messages, and collaborative efforts, VASCERN highlighted the critical role of ERNs in providing expert care and real outcomes for rare disease patients across Europe.

At the heart of this campaign was a simple yet powerful 6-word story: “Rare Patients, Rare Experts, Real Outcomes.” This message was shared widely across social media by all ERNs, emphasising their collective commitment to transforming care for rare disease patients.

Highlighting the facts with official Rare Disease Day infographics

VASCERN kicked off the campaign by sharing the official Rare Disease Day infographics, which presented key statistics about rare diseases such as the number of people affected, the number of rare diseases, and the survival rate. These infographics aimed to raise awareness about the challenges faced by rare disease patients and the urgent need for specialised care and research.

This foundation of awareness set the stage for the next part of the campaign, which was a joint ERN action designed to highlight the real-world impact of ERNs.

A Joint ERN Action

Building on the facts, VASCERN and all 23 ERNs took part in a joint action by sharing custom graphics with the 6-word story: “Rare Patients, Rare Experts, Real Outcomes.” Each ERN posted these graphics on their social media platforms, creating a strong, unified voice that reached audiences across Europe.

This coordinated action highlighted how ERNs and the Clinical Patient Management System (CPMS) are changing rare disease care. CPMS enables healthcare professionals across Europe to hold virtual consultations with rare disease expects, ensuring patients can access expert advice no matter where they live.

These virtual consultations are proving that ERNs are making real outcomes possible for rare disease patients by ensuring they receive accurate diagnoses and treatments faster.

National Workshop on Patients’ Rights & Rare Diseases at the European Parliament

VASCERN’s Coordinator, Prof. Guillaume Jondeau, and Project Manager, Julie Hallac, attended the National Workshop on Patients’ Rights & Rare Diseases at the European Parliament in Strasbourg.

Prof. Jondeau’s presentation focused on the progress of European Reference Networks (ERNs), national rare disease networks, and cross-border cooperation, highlighting 8 years of achievements in rare disease care. He stressed the importance of better information-sharing between patients and healthcare professionals, including greater awareness about ERNs, to improve diagnosis, treatment, and continuity of care across borders.

The discussions reinforced the need to empower patients with knowledge about their rights and the expert networks available to them. This was a key moment for promoting advocacy and improving rare disease care across Europe.

Connecting with healthcare professionals in Paris

VASCERN had a stand Greater Paris University Hospitals – AP-HP Hôpital Bichat – Claude-Bernard in collaboration with Filière FAVA-Multi. The aim was to raise awareness about rare diseases by engaging directly with healthcare professionals and visitors.

The discussions focused on:

• The vital role of European Reference Networks (ERNs) in ensuring that patients receive specialised care, no matter where they live.
• Collaboration between healthcare professionals and patient organisations to improve care pathways.
• The importance of raising awareness to enhance access to expert knowledge and resources for rare diseases.

This initiative was an opportunity to strengthen connections between specialists, hospitals, and patient associations, emphasising the importance of a coordinated approach to rare disease care.

One word, Many languages

To capture the spirit of Rare Disease Day, we invited doctors and patient advocates in the network to share a single word that reflects their thoughts for the day—in their native languages. This initiative brought together voices from across Europe, sharing powerful words like “Hope,” “Collaboration,” “Knowledge,” and “Perseverance” in 13 different languages.

These meaningful contributions were compiled into a video, which you can watch below or on YouTube. The video showed that, despite language differences, the rare disease community stands united with one mission: better care and real outcomes for all.