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07. 2025
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In this issue you will find:
- Editorial
- New Beginnings, Transformation and Fresh Perspectives: Insights from Simon Stones, the New EULAR PARE Committee Chair
- Shaping the Future: Highlights from the PARE Assembly – the EULAR PARE Community Think Tank
- Passing the Torch; Welcoming the New EULAR Vice-President PARE
- Three EULAR Congress Highlights – Shared by a Young PARE Representative, a EULAR Researcher and a Representative of a EULAR PARE Organisation
- Inspiring Journeys: Bulgaria’s Travelling Lupus Photo Exhibition
EULAR PARE Editorial Board
This issue celebrates transition, connection, and new perspectives. As I begin my term as Chair of the PARE Committee, I aim to offer calm, collected leadership while continuing to push boundaries and strengthen ties across our community. I would like to take this opportunity to offer my sincere thanks to Peter Boyd for his outstanding leadership, and to Elsa Mateus for her dedicated service as Vice-President PARE. Together with our new Vice-President, Souzi Makri, I look forward to the journey ahead – united and inspired.
New Beginnings, Transformation and Fresh Perspectives: Insights from Simon Stones, the New EULAR PARE Committee Chair
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It is my privilege to step into the role of Chair of the EULAR PARE Committee — especially in a year that marks a decade since attending my first EULAR Congress. This role is the result of years of listening, learning, and working alongside incredible peers. Over the coming years, my goals are clear:
- Foster collaborative and inclusive research.
- Strengthen our evidence base and ensure it reflects the lived experiences of people with rheumatic and musculoskeletal diseases (RMDs).
- Advocate more strongly for underserved communities, including young people and LGBTQIA+ individuals.
- Expand collaboration — within rheumatology and beyond, across Europe and globally.
While EULAR is a leader in patient involvement, I believe we can go further — by challenging assumptions, expanding opportunities, and staying connected. I’m ready to lead — but also to listen and learn. People with RMDs are integrated as equal partners across the organisation — from Task Forces to the Board — but progress must never stand still.
Shaping the Future: Highlights from the PARE Assembly – the EULAR PARE Community Think Tank
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At the annual PARE Assembly 2025, which took place during the last EULAR Congress, participants engaged in lively discussions: over 80 PARE delegates shared inspiring news and successful projects. In addition, Elsa Mateus term as EULAR Vice-President PARE ended and she passed the position to Souzi Makri, who was officially elected at the EULAR General Assembly in Barcelona.
On a personal level, this gathering is an annual highlight that always offers valuable insights and new ideas. It demonstrates the diversity and strength of our EULAR PARE Community, which is unique.
Passing the Torch; Welcoming the New EULAR Vice-President PARE
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After four years as EULAR Vice-President PARE, I recently handed over the role to Souzi Makri. During my term, we have helped to ensure that patient voices are now present in every EULAR Committee. Today, twelve patient organisations are now scientific affiliates — proof that we are stronger and more visible than ever.
Souzi, I know you will take care of our volunteers, and continue to support partnerships across EULAR. Good luck to you and to all our new volunteers joining the network!
Prof. Loreto Carmona, rheumatologist and clinical epidemiologist from Spain.
"My 2025 EULAR Congress was about opening my eyes, receiving warm hugs, waving hellos, and conversing with incredible people"
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I am very thankful to the EULAR Congress Committee, which invited me to deliver two talks and chair a session. The first was on "Sustainability of Rheumatology," featuring Prof. Pedro Machado on the rise of autoimmune diseases, Dr. Sofia Ramiro on workforce shortages with data from RheumaFacts, and my interview with a representative from the Spanish Ministry of Health on drug access and availability. I also presented in a session on social determinants of health (the non-medical factors that influence health and well-being) — my new favourite topic.
This was also my last EULAR Council Meeting as EULAR Advocacy Committee Past Chair, and so the Advocacy Committee meeting was very emotional. I’m full of appreciation for the opportunity to have led the Advocacy Committee.
Prof. Loreto Carmona (left) with colleagues.
"My absolute highlight was the PARE Session: Breaking the silence on mental health and inflammation"
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This session addressed crucial issues for people with RMDs: the impact of inflammation on mental health, coping with loneliness, managing fibromyalgia pain, the role of physiotherapy and exercise, and how the patient organisation in Ghana is supporting patients. Although RMDs are challenging, effective treatment and community support can make a significant difference.
Eszter Rozan, President of Hungarian League of Patients with Rheumatic Diseases, EULAR PARE Committee Member.
Chairs, speakers and abstract presenters of the PARE Session “Breaking the silence on mental health and inflammation”.
Caroline Kirsten, Leader-elect of the EULAR Young PARE Working Group, member of the German Rheumatism League.
"This year, the EULAR Congress offered particularly valuable insights into RMDs, especially from the perspective of PARE"
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One important finding was the growing recognition that RMDs are holistic conditions requiring care that goes beyond just addressing physical symptoms. The sessions on mental health and the impact of RMDs on relationships were particularly moving and informative. Equally important were the discussions on marginalised groups, such as the LGBTQ + community, and the concept of minority stress. These conversations marked an important step towards more inclusive and comprehensive care for everyone living with RMDs.
PARE Fishbowl session “From exclusion to empowerment: Engaging marginalised groups” at the EULAR 2025 Congress in Barcelona.
Inspiring Journeys: Bulgaria’s Travelling Lupus Photo Exhibition
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The travelling photo exhibition "Life is More Than the Disease", organised by the Bulgarian Organisation for People with Rheumatic Diseases, presents the experiences of people living with Lupus. Each photograph conveys the circumstances and perspectives of participants who have been diagnosed with Lupus, highlighting the role of treatment and support in maintaining an active and meaningful life.
The exhibition’s message emphasises that a Lupus diagnosis signifies a new chapter in life, encouraging self-awareness and prioritising important aspects of life. Additionally, the exhibition seeks to increase public understanding of Lupus, noting that people with this condition have ambitions, skills, and a life that goes beyond their diagnosis.
Eight individuals are featured, including a climbing-enthusiast teacher, a jeweller-cyclist who completed the “Vitosha 100” ultra-marathon, a TV professional drawn to traditional singing, and a tailoring studio owner, among others. First unveiled at a business centre in Sofia, the exhibition has travelled to a university hospital, a rheumatology clinic in Plovdiv, and a national doctors’ conference — with more stops planned across Bulgaria.
Boryana Boteva (3rd from right) with some of the portrayed people for the impressive exhibition and the photographer (right).
EULAR PARE Editorial Board
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- Corinna Elling-Audersch, Working Group Leader, Germany
- Jeanette Andersen, Denmark
- Nele Caeyers, PARE Communications Sub-Committee Chair, Belgium
- Francisco Javier Carreira Roca, Spain
- Simone Makri, PARE Newsletter Editor, Cyprus
- Pamela de Rosa, Italy
- Anja Römling, Belgium
- Tanita-Christina Wilhelmer, Austria
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