Rare Disease Day 2026: Epidermolysis Bullosa at the Heart of the European Parliament

For Rare Disease Day, the Epidermolysis Bullosa (EB) community marked a historic milestone: EB was brought to the heart of European decision-making during a dedicated event at the European Parliament.

More than an awareness moment, this event became a powerful political statement: health equity for rare diseases like EB must become a European reality.

The event received strong cross-party political backing, with representation from Spain, Germany, Croatia, Poland and Belgium and, notably, the involvement of the President of the European Parliament.

This high-level institutional endorsement sends a clear signal: Epidermolysis Bullosa is not invisible, and rare diseases belong on the European political agenda. The message was unequivocal: An approved treatment should not depend on a patient’s postcode.

A United DEBRA Voice Across Europe

The strength of the event lay in the collective mobilisation of the EB community.

• DEBRA Spain powerfully conveyed the lived experience of people living with EB who are still waiting for adequate treatment, and highlighted the strength of the global DEBRA ecosystem in supporting patients and families around the world.

• DEBRA Belgium brought the perspective of patient advocacy and the lived reality of navigating fragmented systems.

• DEBRA Germany presented a powerful success case demonstrating that access pathways can work in practice.

• DEBRA International Executive Director addressed the “Paradox of Access” at EU level, outlining how regulatory approval does not automatically translate into equitable access across Member States. Her intervention positioned EB as a test case for European health equity and called for stronger coordination mechanisms to prevent inequalities between countries.

Strong Alignment with Dermatology Leadership

The event was further reinforced by the participation of the European Academy of Dermatology and Venereology (EADV), underlining the need to recognise skin diseases as EU public health priorities.

This alignment between patient advocates and dermatology leadership marks an important strategic step. EB was clearly positioned not only as a rare disease, but also as a severe dermatological condition requiring systemic European attention.

Discussions are already underway to explore further joint advocacy actions with dermatology stakeholders at European level.

Recent therapeutic innovations have brought new hope. Yet without coordinated access mechanisms, these advances risk deepening inequalities rather than reducing suffering.

The event at the European Parliament marks an important shift:

EB is now firmly positioned within

• Rare disease policy priorities

• Skin disease public health strategies

• European health equity discussions

  
  

The Rare Disease Day message from the EB community is clear:

Europe has the tools.

Europe has the innovation.

Now Europe must ensure equal access.

The momentum generated in Parliament must translate into sustained political and structural action in the months ahead.