An International Patient Conference will be hosted as a satellite hybrid event to the ANCA Vasculitis Workshop at the Clayton Hotel in Dublin, Ireland. The two-day event is free and offered in person and online.

Draft Agenda:

Saturday, April 2
1:05  – 1:20 Patient experience living with vasculitis (large vessel vasculitis, medium vessel vasculitis, small vessel vasculitis)

1:25 – 2:00 Round Table Discussion, Chaired by Peter Verhoeven and Joyce Kullman. Vasculitis Worldwide Today
David Jayne, Richard Kitching, Peter Merkel and representative from Malta (TBC)

2:05 – 2:35 COVID 19, Vaccinations and Boosters, Stephen McAdoo, Emma Leacy, Dutch Specialist (TBC)

2:40 – 2:55 Fatigue in Vasculitis, Lorraine Harper

Tea/Coffee Break  (room being divided for parallel sessions)

Room 1) 3:15 – 3:30 Management of Eye Symptoms in Vasculitis (speaker to be confirmed)

Room 2) 3:15 – 3:30 Vasculitis in Children, Louise Oni

Room 1) 3:35 – 3:50 Cardiovascular Impact in Vasculitis (speaker to be confirmed)

Room 2) 3:35 – 3:50 Microbiomes in Vasculitis, Representative from Microbiome Ireland (UCC) and Andreas Kronbichler

Room 1) 3:55 – 4:10 HELICAL Early Stage Researchers, Environmental Triggers in Vasculitis

Room 2) 3:55 – 4:10 HELICAL ESRs Molecular Influences in Vasculitis

Room 1) 4:15 – 4:30 HELICAL ESRs GCA Vasculitis

Room 2) 4:15 – 4:30 HELICAL ESR Data Protection in Vasculitis Research

WRAP-UP and Dinner at 19:30 in Clayton Hotel

Sunday, April 3
9:30 Welcome Back and Introduction of Day 2

9:35 – 11:15 Interactive Workshop on Patient-Reported Outcomes, Registries and the FAIRVASC Project

9:35 – 9:45 Patient-Reported Outcomes, Peter Merkel

9:45- 9:55 Registries and FAIRVASC Project, Matthew Rutherford

9:55- 10:05 Why PROs in Registries, Peter Verhoeven and Zdenka Hruskova

10:05 – 10:15 How to Integrate PROs in Registries

10:20 – 10:40 Breakout Rooms – Which PROs Are Most Useful from Patient Perspective

10:40-11:00 Feedback and Plans Going Forward

11:10 – 11:40 What Good Care Looks Like
VOICES project Allyson Egan Nad, Rosemary Hollick
ERN RITA Patient Journeys Project, Julie Power

11:45 – 1:00 What Vasculitis Means To Me – Multidisciplinary ART Workshop, Shanali Perera