On Friday 13 November, our Head of Advocacy, Mary Nicholson, will be in Dublin representing the EB community at a special event hosted by Rare Diseases Ireland (RDI). She’ll be joining rare disease advocates, researchers, policymakers and industry for a day focused on one big question: how do we turn research and innovation into real, lasting change for people living with rare diseases?
The event is an official Associated Event of Ireland’s Presidency of the Council of the European Union, which means the conversations happening in that room have a real chance of shaping what comes next across Europe.
More than 30 million people in Europe live with a rare disease. That includes every person living with EB and every family we walk alongside. On the day, the focus will be on making research and innovation the standard of care for all rare diseases, building momentum for a coordinated EU Action Plan for Rare Diseases, and looking at how the Biotech Act can strengthen Europe’s innovation. Above all, it’s about showing what’s possible when patients are treated as true partners.
Why this matters to us
Mary will be speaking about patient partnership, and she’ll be drawing on something very close to our hearts: our experience of the reimbursement process for the first treatment for Epidermolysis Bullosa (EB) to be approved by the European Medicines Agency (EMA).
When that approval came, it was a moment of real hope for our community. But we learned quickly that approval is only the beginning. What truly matters is whether a treatment actually reaches the people who need it. Working through the long road from approval to reimbursement here in Ireland showed us just how important it is for patients and patient organisations to be involved from the very start, listened to all the way through, and treated as genuine partners rather than an afterthought.
We’ve seen it first-hand. When people living with a rare disease have a seat at the table, discoveries move more quickly from the lab to everyday life, and better outcomes become possible. That’s what this event is all about, bringing the rare disease community into the room and into the decisions that affect their lives.
We’re proud to be taking part alongside Rare Diseases Ireland, IPPOSI, the Neurological Alliance of Ireland and the NCBRS Worldwide Foundation.
Come and join us
If you’re working to improve access to medicines and care for people living with rare diseases, we’d love to see you there.
Date: Friday 13 November 2026
Location: Dublin, Ireland
Registration is now open, and you can sign up here.
You’ll find more information about the event on the Rare Diseases Ireland website.
