Summit2025 - Vasculitis International

EUROPEAN VASCULITIS PATIENT SUMMIT 2025

days from now !

AGENDA Friday NOV 14TH

opening

12:00 – 13:00 Registration

13:00 – 14:00 Lunch

14:00 – 14:30 Welcome and Introduction

Peter Verhoeven – dr. Zdenka Hruskova
Bc. Anna Arellanesová (ČAVO and EURORDIS)

Prof. dr. Onno Teng (ERN-RITA)

innovative therapies

14:30 – 14:50 Vasculitis therapies:
the past, present and future.
(dr. Ulf Schönermarck)

14:50 – 15:10 The Digital Pathway:
personalized care plans
(dr. Jolijn van Leeuwen)

15:10 – 15:30 CAR T-cell therapy:
from “control” to “cure”?
(Dr. Václav Heřman)

15:30 – 16:15 Small Group Discussions:
The Patient Perspective

16:15 – 16:30 Coffee Break

16:30 – 16:45 Plenary Feedback from Group Discussions

artificial intelligence

16:45 – 17:05 AI : Hype or Game Changer?

(dr. Rob Ross)

17:05 – 17:25 AI : Conversational Agents

(dr. Courtney Ford)

17:25 – 17:45 AI : Supporting patients

(Cecil Armstrong)

17:45 – 18:15 Plenary Q&A and Discussion: Impact of AI on the patient community

Photo shoot & Dinner

18:15 – 18:30 Photo shoot

18:30 – 19:00 Break

19:00 – 21:30 Dinner

The conference dinner that evening is considered an integral part of the program, as it provides a valuable opportunity for networking and collaboration. We therefore kindly ask all participants to attend.

AGENDA SATURDAY NOV 15TH

OPENING

08:30 – 09:00 Recap of Day One

PATIENT ADVOCACY

09:00 – 09:20 Challenges in AAV

(dr. Marta Casa Moura)

09:20 – 09:45 Plenary Q&A and Discussion.

09:45 – 10:00 Patient Advocacy Groups:

Broad, Focused or Both?

(Peter Verhoeven)

10:00 – 10:30 Group Discussions: Pro’s and Con’s of the different models

10:30 – 10:45 Plenary Feedback Group discussions

10:45 – 11:00 Break

QUALITY OF LIFE

11:00 – 11:20 What is the status today

(dr. Rosemary Hollick)

11:20 – 12:00 What are the unmet needs
(group discussions)

12:00 – 12:30 Plenary Feedback group discussions

CLOSING

12:30 – 13:00 Wrap-up and Closing Remarks

13:00 – 14:00 Lunch and Departure

Download PDF here.

SPEAKERS

Anna Arellanesová BSc

Czech Association for Rare Diseases (ČAVO )

Anna is the chairwoman of the Czech Association for Rare Diseases (ČAVO )

Cecil Armstrong Esq.

VIA - Vasculitis Ireland Awareness

Cecil is a vasculitis patient and the current chair of the Irish patient organisation VIA

Dr. Marta Casal Moura, MD, MSc, MSPH

Mayo Clinic College of Medicine and Science, Rochester, MN, USA. and Universidade do Porto, Porto, Portugal

Dr. Casal Moura is a well known researcher in the field of vasculitis and the first author of the recently published article "Challenges in the Diagnosis, Classification and Prognosis of AAV"/

Dr. Courtney Ford

University College Dublin

Dr Courtney Ford is an Assistant Professor in the School of Information and Communication Studies. Her research focuses on explainable artificial intelligence (XAI) and AI literacy, with interests in trust calibration and applications of AI in healthcare contexts. She is the Deputy Programme Director for the MSc in Information Systems programme.

Dr. Vaclav Herman

Institute of Hematology and Blood Transfusion (UHKT)

Dr. Václav Heřman works in the transplant unit and ICU at the Institute of Hematology and Blood Transfusion (UHKT) in Prague, where he specializes in treating patients undergoing hematopoietic stem cell transplantation and CAR T-cell therapy. UHKT is the Czech Republic's largest hematology center and maintains close affiliation with the General University Hospital Prague.

Dr. Rosemary Hollick

University of Aberdeen

Dr. Hollick is an Academic Rheumatologist at the University of Aberdeen. She leads an innovative programme of applied mixed-method health services research which aims to provide new insights to inform effective, person-centred, and sustainable improvements in health and well-being for people living with rheumatic and musculoskeletal diseases (RMDs).

Dr. Jolijn van Leeuwen

Leiden University Medical Hospital

Dr. van Leeuwen conducted research into new treatment strategies for ANCA-associated vasculitis. She focused on the smart use of patient data to gain new insights (real-world evidence).

Dr. Rob Ross

Technological University Dublin and Adapt Research Center

Dr. Ross holds a PhD in Situated Dialogue Systems for the University of Bremen in Germany, as well as an MSc and BSc in Computer Science & Experimental Physics from University College Dublin. Dr. Ross teaches courses on Deep Learning and Machine Learning methods as well as Advanced Topics in Computational Intelligence.

Dr. Ulf Schönermarck

Ludwig-Maximilians-Universität Klinikum München

Dr. Schönermarck is a Nephrologist at the University Hospital Munich, Germany. His clinical and research interests focus on diagnosis, treatment and outcome of systemic diseases with renal involvement including ANCA-associated vasculitides and thrombotic microangiopathies. He is also interested in improving clinical collaboration with laboratory medicine and pharmacology.

Prof. dr. Onno Teng

Leiden University Medical Center - The Netherlands

Prof. Teng is head of the Leiden outpatient clinic for Lupus, Vasculitis and Complement-mediated Systemic diseases (LuVaCs) which accommodates top-referral, multidisciplinary, tertiary care on a regional and national level. He has recently been appointed as the European coordinator for rare autoimmune diseases within ERN RITA and Stream Lead for Autoimmune/Vasculitis.

Organising committee

Peter Verhoeven

Vasculitis International

Peter is the president and co-founder of Vasculitis International . He led the Dutch vasculitis patient organisation for 18 years and was the co-founder of RIPAG the patient group within ERN-RITA . He is a co-author of the "EULAR recommendations for the management of AAV - 2022 Update" and the recently published article "Challenges in the diagnosis, classification and prognosis of AAV."

Dr. Zdenka Hruskova

General University Hospital in Prague

Dr. Hruskova is the deputy head of the nephrology department of the Charles University Hospital in Prague. She is very active in international research regarding vasculitis and international projects like FAIRVASC. She and her supervisor Prof. Tesar played a pivotal role in establishing the Czech patient organization earlier this year.

Inge Linn - Mes

Vasculitis International and Vasculitis Stichting NL

Inge is a member of the Vasculitis International Legal Board and write columns for Vascuzine, the magazine of the Dutch Vasculitis Patient Group: Vasculitis Stichting.

Katerina Kdbcová

Vaskulitida.cz

Katerina is the president of the Czech patient organisation VASKULITIDA.CZ

VENUE

Hermitage Hotel Prague
Svobodova 1, 128 00 Prague 2,
Czech Republic
tel: +420 225 995 225
email: info@hermitageprague.com

OTHER INFO

Local transportation

If you travel by plane a taxidriver with your name sign will pick you up from the airport and bring you to the hotel.

After the event another taxi will pick you up at your hotel and bring you to the airport.

Registering at the event on Friday.

Please make sure you are in the hotel at 12:30 on Friday.
There will be a small boot where you will be handed a badge.
Lunch will start at 13:00 in the restaurant.

The conference dinner
The dinner is an integral part of the program, offering a key opportunity for collaboration and exchange. We kindly ask all participants to attend.

Photo’s
There will be a photographer during both days.
Do not hesitate to ask him/her to make a particular photo.
Make sure you do not miss the group photo scheduled on Friday afternoon.

Questions during your stay

Your first point of contact is Inge Linn-Mes.
But several other volunteers will help you if needed.

About Prague

Here you can download a free pocket guide with interesting info about Prague.