EULAR 2023: Our highlights
"Since its introduction in 2000, the EULAR European Congress of Rheumatology has become the primary platform for exchanging European scientific and clinical information."
It’s hard to know where to begin in attempting to summarise EULAR 2023 because of the enormity of the congress. EULAR is the European Alliance of Associations for Rheumatology and the EULAR annual congress is one of the biggest international rheumatology conferences in the world.
This year there were over 14,000 people attending the conference. 14,000 people who are committed to making life better for those with rheumatic diseases (RMDs).
"A vision of a world where all RMDs are recognized, diagnosed, and ultimately prevented or cured."
The congress was opened by EULAR president, Annamaria Iagnocco, revealing EULAR’s new 5 year strategic plan.
"The new strategy for 2024 - 2028 is driven by a vision of a world where all RMDs are recognized, diagnosed, and ultimately prevented or cured. To realize this vision, EULAR's mission is to minimize the impact of RMDs on individuals and society."
We were incredibly excited to hear about the new vision which so closely echoes our own vision in relation to Juvenile Idiopathic Arthritis (JIA) where we are working towards a world where no child has to suffer from arthritis. Essentially for us that involves research towards a cure for JIA so to hear about EULAR wanting to see a world where all RMDs are ultimately prevented or cured was music to our ears.
"Innovation, once implemented, will change lives."
Former EULAR president, Iain McInnes, also spoke in the opening plenary about leadership, scientific guidance and innovation, highlighting the important and critical role of patients, and concluding that "innovation, once implemented, will change lives."
The four days were jam-packed with talks, interactive sessions, findings of the latest research projects and of course, our own presentations showcasing some of our latest work and findings. As hard as it is to pick out our highlights, here are just a few from day 1:
The session entitled "Buy one - get 4 free" on RMDs and comorbidities began with the first speaker, Professor Xenofon Baraliakos who explained how fear, depression and fatigue are independent of each other but are interconnected. He focussed his talk on mental health and how those with RMDs are at a higher risk of depression and issues with their mental health. Knowing that 1 in 10 may have depression, he argues for starting treatment early. Not necessarily with medications for mental health but using all the tools that encompass treatment for mental health.
Jenny Christensson spoke about comorbidities from a patient perspective, sharing her Rheumatoid Arthritis story and explaining some of the issues she has developed since including, alarmingly, a condition that she had pinpointed years before her doctors would listen and diagnose it. Concluding that doctors “should maybe listen to your patient” more often.
Leticia Leon Matteos spoke about how psychology can help those with RMDs and comorbidities including a psychological screening model that uses only 5 questions. Encouraging patients to choose which changes they want to implement to support their mental health and support their condition, means that they are more likely to stick with those changes over time.
Laura Campbell from Keele University introduced us to the Beefree initiative – an online platform to support mental health for those with long-term pain. It includes free training modules as well as animations and a mental health toolkit.
Shalaleh Karkon from Trinity College Dublin shared the preliminary findings of the FAME-W intervention for those with inflammatory arthritis with a key learning point for self-management being to breakdown each symptom individually to then manage your condition better. By understanding fatigue better, patients were able to understand that it isn’t laziness but in fact a symptom of their inflammatory arthritis.
Day 2 of the congress saw Juvenile Arthritis Research’s very own founder, Richard, presenting some early findings from his PhD research with the University of Manchester highlighting differences in incidence and prevalence of JIA based on ethnicity.
We were also presenting some of our work in the session "New insights in the care and management of JIA". As part of the same session, we heard some interesting findings in relation to recurrence of joint inflammation in JIA and how the same joints are more likely to flare in future as opposed to different joints which have not previously had inflammation.
Another highlight of the day was the session entitled "Mind the Gap: improving communication and outcomes" which was a EULAR PARE session (PARE being the patient representative arm of EULAR).
"Deep down that young child who lived daily with indescribable pain exists and she would not have asked for the support."
Shauna O’Connor read her incredibly poignant and powerful essay about living with JIA since the age of 4. It will resonate with many and it is available to read here.
Professor Christopher Edwards talked about the impact of quality of communication, noting that studies have shown that poor literacy can impact on communication and how bilingual participants showed higher pain intensity when speaking the language congruent with their dominant cultural identification.
Mara Guerriero, an academic pharmacist from Portugal, shared findings from a study in diabetes where the findings would also be relevant to RMDs, showing the importance of the language and how that can influence a patient’s actions either positively or negatively depending on the words and language that is used.
The eye-opening presentation by Tanita-Christina Wilheimer was very impressive with innovative ways of learning about empathy towards patients with rheumatic diseases.
Laura Campbell shared the importance of well financed, well supported patient involvement in research (also known as PPIE) in research where stakeholders are committed to taking on board and using recommendations.
The EULAR family dinner was a place where new introductions were made, and existing connections deepened with a true family feel to the evening, hearing once again the vision and strategy for EULAR over the next 5 years and well as hearing from those representing the different strands or 'families' that form EULAR.
Further highlights for us were having our abstract about the work we do with schools selected for a EULAR Press release. And the opportunity for meeting in person those amazing people who we have worked with online over the past few years - far too many to mention everyone here but including Dr Eve Smith who is instrumental in organising WORD day each year, Joel Nelson who is an incredible patient advocate in the world of rheumatic conditions, the amazing Dr Stephanie Shoop-Worrall and Dr Leanne Kearsley-Fleet from the University of Manchester, colleagues from the British Society for Rheumatology and many others who it is a privilege to work with.
And before we knew it, the congress was over for another year. But the connections made, and the inspiration, learning and knowledge gained, goes beyond the congress and will become woven into what we do as we move forwards.
It has been an honour and a privilege to have been part of and continue to be part of this incredible global family making a difference in the lives of those with rheumatic diseases including JIA.
This is just a very small glimpse into the EULAR congress. We live-tweeted throughout the congress covering even more of the sessions, so you can read more about some of the incredible scientific research happening on our Twitter feed.
The large billboards inside and outside of the congress included the important awareness-raising message that RMDs can affect all ages.
EULAR President, Annamaria Iagnocco, speaking in the opening plenary.
Amber would be live-drawing the new EULAR strategy throughout the congress on these white walls.
It was an honour to represent Juvenile Arthritis Research at EULAR 2023.
Presenting some of our latest work in the "New insights in the care and management of JIA" session.
Meeting friends from CYLPER and the Hellenic League Against Rheumatism who we presented alongside at a EULAR PARE conference earlier in the year.
Next to the EULAR live-drawing strategy wall.
Speaking to an audience of several hundred about the leading work we are doing in the UK.
Meeting fellow colleagues from the ENCA board.
Meeting Dr Eve Smith who is a fellow member on the WORD day international organising committee.
Prof. Iain McInnes speaking at the EULAR dinner at Milan's stunning Castello Sforzesco
Prof. Michael Beresford speaking at the EULAR dinner at the Castello Sforzesco
Next year's EULAR congress will be taking place in Vienna. We look forward to seeing what further developments will be happening in the world of rheumatology between now and then as we work towards our vision of a world where no child has to suffer from arthritis.