About PXE
Research
PXE International is planning a PXE community gathering in Belfast, Northern Ireland. The main PXEer session will take place on September 18 at Queen’s University Belfast. The meeting will bring together people affected by PXE, families, clinicians, and researchers for invited speakers, plain-language research updates, Q&A, and conversation. The gathering will focus on learning, connection, clinical trial readiness, and how the PXE community can help move research and treatment development forward.
Saturday, September 19th will be a "research day" - you are invited to participate in some new eye imaging methods, tear collection, and/or blood collection.
Draft agenda below.
Hotel recommendations within reasonable distance of the meeting. Belfast Hotels near Queens
9:00 AM – Registration Arrive, check in, pick up name tags, and meet other attendees. Name tags include colored dots to show each person’s connection to PXE: • I have PXE • I am a relative of someone with PXE • I am a friend or supporter of someone with PXE • I am a clinician, researcher, or other professional
9:30 AM – Welcome to Queen’s University Belfast
Professor Imre Lengyel Professor, Wellcome-Wolfson Institute for Experimental Medicine, Queen’s University Belfast
Welcome from the University and the Wellcome-Wolfson Institute for Experimental Medicine
9:45 AM – Welcome from PXE International and PXE 101
Sharon F. Terry Co-founder and CEO, PXE International and CEO, Genetic Alliance
A plain-language overview of pseudoxanthoma elasticum, including skin, eyes, vascular issues, gastrointestinal issues, and genetics.
10:30 AM – Break
10:50 AM – Small-Group Sharing
Participants move into small groups based on the number on the back of their name tag. This session gives PXEers, relatives, carers, and supporters a chance to meet one another, share experiences, and hear how PXE affects different people in different ways.
11:30 AM – Questions and Discussion
Return to the main group for questions, discussion, and shared themes from the small groups.
12:30 PM – Lunch
1:30 PM – Introduction to PXE Research
Sharon F. Terry
A plain-language overview of current PXE research, why natural history studies matter, and how research participation helps prepare for future clinical trials.
1:45 PM – Digital Cabinet and Community Driven Innovation
Ian Terry Founder and CEO, Aretetic Solutions and Ethlen Solutions, and Communications Co-Officer, Clan MacEwen Society SCIO
Ian will explain why these tools matter, how they help PXEers share information and priorities, and how they can strengthen future studies and clinical trial readiness. Ian will demo the system.
2:30 PM – Belfast PXE Research
Professor Imre Lengyel
Overview of a feasibility study to test whether a set of eye scans, tear collection, and possibly blood collection can be done in a way that works for PXEers and carers. The goal is to understand how this kind of protocol could operate in practice and what would make participation easier or harder.
3:15 PM – Questions and Discussion
Open time for questions from PXEers, relatives, carers, and supporters.
4 PM – What now, next steps Closing, Snacks, and Networking Final comments, informal conversation, and time to connect with other attendees.