Connecting Communities: Inside EULAR PARE and Its Global Impact

 

When it comes to shaping the future of rheumatology advocacy, few organisations have as wide-reaching an influence as EULAR – the European Alliance of Associations for Rheumatology. Representing people with rheumatic and musculoskeletal diseases (RMDs), health professionals, rheumatologists, researchers, and scientific societies across Europe, EULAR is a hub for collaboration, education, and innovation.

At the heart of this network is EULAR PARE – a vibrant community of national organisations for people living with arthritis and rheumatism. PARE connect patients and patient representatives as well as offering training, advocacy, and knowledge-sharing. PARE works to ensure that the patient voice is heard loud and clear in shaping research and policy.

People outside of Europe can benefit from its initiatives, such as the Patient Research Partner (PRP) training programme, which equips patients to actively contribute to research projects. For the next generation of advocates, Young PARE offers a unique platform for young people to gain skills, insights, and confidence to lead the way in patient advocacy.

 

One of the highlights of the year is the EULAR PARE Conference in Brussels, which brings together advocates, professionals, and volunteers for a week of learning and collaboration. This year’s event kicked off with practical training sessions for committee members and volunteers—a resource so valuable that the iPARE working group is exploring ways to share it with the wider international community.

 

The afternoon featured thought-provoking presentations, including one by Andri Phoka on advocacy work by CYLPAR in Cyprus, and another on the untapped potential of people with RMDs in the workforce—a powerful reminder of the need for inclusive employment practices.

The focus then shifted to a Hackathon. Over two days, multi-stakeholder teams worked intensively to co-create solutions for a pressing challenge—how to make patient involvement in research more meaningful and less tokenistic. Research shows that Patient Research Partners (PRPs) often face barriers to genuine engagement, so the hackathon aimed to design practical programmes to change that. Delegates split into four groups, each tackling a different aspect of the problem. The energy was high, and creativity flowed as teams pitched their ideas to a “Dragon’s Den” panel. Jo Davies described the experience as “a fun and interactive way to connect with delegates and make new friends,” and was impressed by the innovative use of technology to create presentations and videos.

Another highlight was the Best Practice Fair, showcasing 15 outstanding projects from across Europe. The winner, Hrönn Stefánsdóttir, Chair of the Icelandic Rheumatology Association, presented a beautiful children’s book, Maria and Mom’s Secret, designed to help children understand their parent’s condition. Former ASIF Trustee, Maranda van Dam, from Axial Spondyloarthritis Association of South Africa, earned second place—congratulations to both for their inspiring work!

The conference closed on a high note: informative, fun, invigorating, and inspiring. It was a celebration of collaboration and a reminder of the power of community—old friends reunited and new friendships formed.

Looking ahead, mark your calendars for the annual EULAR Congress in London, 3–6 June. Abstract submissions are open until 15 January, and if your abstract is accepted, you may also be eligible for a travel bursary.

 

 

 

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