Doing more than a scratch- Using new technologies to help people with psoriatic disease
The European Federation of Psoriasis movements – EUROPSO organised a panel discussion „Doing more than a scratch- Using new technologies to help people with psoriatic disease“.
The event was held on Thursday, 25 May 2023, from 14:00 to 18:00 in room JDE62 at the European Committee of the Regions. We were able to hear from multiple experts about challenges in the patient journey, current state of psoriatic disease treatment in Europe and importance of further research in this area.
This event was kindly supported by Mr. Ivan Žagar, President of the National Delegation of Slovenia and hosted by the European Committee of Regions.
Agenda
Thursday, 25 May 2023, Committee of the Regions, Brussels
14:00 – 14:30 Registration of Participants
14:30 – 14:45 Welcome and Introduction
Moderator
Representative from the Slovenian CoR Delegation (opening and introduction) Ivan Žagar, President of National Delegation of Slovenia
Jan Koren, President of The Federation of European Psoriasis Association (EUROPSO)
14:45 – 15:05 The EUROPSERVATORY Project: The number of clinical trials is decreasing but the patients’ needs are not
EUROPSERVATORY REPORT for 2022 (December)
R&D (Clinical trials overview)
David Trigos, Vice President of The Federation of European Psoriasis Association (EUROPSO) (10 minutes)
Soultana Koukopoulou, EUROPSO Board member (10 minutes)
15:05 – 15:25 Treating psoriatic disease Europe: the healthcare professional’s role
Prof. Laura Jane Peckham-Cooper, Speaker from Group for Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) (Topic: Importance of PsO/ PsA research projects) (15 minutes)
Frida Dunger Johnsson, Executive Director, Speaker from the International Federation of Psoriasis Associations (IFPA) (Topic: The importance of advocacy work and policy shaping in psoriasis) (15 minutes)
15:25 – 16:00 Joint proposition for future EU action on psoriatic disease – Action Points from each speaker’s perspective
Moderator
Key speakers
16:00-16:15 Coffee break outside the Room JDE 62
16:15 – 17:15 Panel Discussion
All participants
Q&A from the audience
17:15 – 17:30 Closing Jan Koren, President of The Federation of European Psoriasis Association (EUROPSO)
Speakers
(in order of appearance in the Agenda)
Ivan ŽAGAR
President of Slovenian National delegation in the Committee of Regions and Mayor of the Municipality of Slovenska Bistrica
Political group: EPP
Member: ENVE, COTER (First Vice-President
of COTER), CoR Bureau – Vice President,
Enlargement Day, SPO North Macedonia
Photo credit: memberspage.cor.europa.eu
Jan Koren
President of EUROPSO
Economist by education, Koren entered the world of patient advocacy first as an activist who wanted to bring positive changes to psoriasis patients in Slovenia. He assumed role of the President of EUROPSO (the European Umbrella Organisation for Psoriasis Movements) in 2016 and has been reelected to that position in 2019 and 2022. Koren is the President of the Psoriasis Association in Slovenia since 2019.
He is driving change in psoriasis care pathway in Europe by leading and/or participating in various patient-centered projects. Koren was part of the leading team in the multi stakeholder Pan-European initiative called “Elevating the Standard of Care for Patients with Psoriasis: ‘Calls to Action’ from Epicensus“.
David Trigos Herraez
Vice President of EUROPSO
Born in Oviedo, Spain, in 1979.
Psoriasis patient since 1998 and psoriatic arthritis since 2013, I am involved in patient advocacy since 2012 as a volunteer in different patient organisations.
Since September 2016, vice-president of EUROPSO, European Federation of Psoriasis Organisations, position in which he continues today and former member of the Board of Directors of IFPA, the World Federation of Patients’ Associations in the period 2019 – 2022.
Since 2015 member of the Spanish National Platform of EUPATI, European Patients Academy on therapeutic Innovation where he has developed different functions in courses, meetings, congresses, until in 2019 became professionally involved as Coordinator of the Spanish platform.
Involved as PRP (Patient research partner) in different research projects at European and global level in the fields of psoriasis and generation of evidence from patient associations, he is also co-author of the European Guide for the systemic treatment of psoriasis vulgaris (Euroguiderm) and of different articles published in different scientific media.
Since 2017 he has been participating as an Individual expert advisor at EMA (European Medicines Agency) in different advisory processes.
Tina Koukopoulou
Board Member of EUROPSO
Ms Koukopoulou is a Surveyor Engineer, MsS and holds a PhD in Cadastral Systems. She works full time in the public sector, at the Department of Urban Planning in Thessaloniki, in Northern Greece
Tina is a patient diagnosed with psoriasis and psoriatic arthritis. She is been living with the psoriatic disease since she was 16 years old. She is a patients’ advocate and committed campaigner for patients’ rights and raising public awareness about dermatological conditions.
She is a founding member of The Panhellenic Association of Patients with Psoriasis and Psoriatic Arthritis ‘Epidermia’ and served as its first President. She is currently the Treasurer of the association. Furthermore, she is a member of the Board of Directors of Euro-Pso. Tina serves in both posts voluntarily.
Dr Laura Savage MBChB, BSc(Hons), MRCP (UK), MRCP (Dermatology), PhD
Consultant Dermatologist, Leeds Centre for Dermatology, Chapel Allerton Hospital and Honorary Senior Lecturer, University of Leeds, UK
Dr Laura Savage is a Consultant Medical Dermatologist (Leeds Teaching Hospitals NHS Trust) and Honorary Senior Lecturer (Faculty of Medicine and Health, University of Leeds), where she co-leads the complex psoriatic disease and has extensive experience in utilising targeted immunomodulatory therapies across a number of IMIDs.
Dr Savage’s research interests cross the boundaries of both dermatology and rheumatology and relate primarily to the development of strategies to detect and manage early psoriatic arthritis in patients with psoriasis.
Aside from her role as elected board member (Dermatologist at Large) for the Group for Research in Psoriasis and Psoriatic Arthritis (GRAPPA), Dr Savage is an elected committee member of the British Society of Medical Dermatology, an invited author/member of the EULAR Task Force on Points to Consider for the definition of clinical and imaging features suspicious for progression to psoriatic arthritis, and part of the taskforce currently updating the EULAR recommendations for management of psoriatic arthritis with pharmacological therapies.
Frida Dunger Johnsson
Executive Director of IFPA
Frida is responsible for managing IFPA operations, facilitating strategic development and building global partnerships.
Frida previously served as Secretary General for the non-profit organisation Emmaus Stockholm while serving on the Board of ForumCiv and ActionAid.
Frida holds a Master’s degree in International Development Studies and Cultural Encounters and has previously worked as CEO for a management consultant firm. She has previous experience in business development and sales, as well as in EU-level research regarding health and minority.
Frida is committed to social justice and sustainability, and as Executive Director of IFPA, advocates for millions of people living with psoriatic disease worldwide.
Contact
Contact Person: Jelena Misita, Email: jelena.misita@euro-pso.org
Organizer: Zveza Europso
