January 2026

As 2026 begins, we celebrate new energy and shared purpose. This issue includes a first look at EULAR's upcoming Equity Fund, a summary of our new volunteer training, highlights from EPIG’s meeting in Brussels, and a spotlight on the Best Practice Fair winners from our EULAR PARE Conference. From our PAED x PARE webinar on reproductive health to an expert introduction to CAR-T treatment, one thing is clear — patient power is driving real, positive change across European rheumatology care and research.  

Before you dive in, we would love to hear from you. Please take 5 minutes to share your feedback in our short newsletter survey by 15 February. 

~By Simon Stones, EULAR PARE Committee Chair. 

Something New is Coming: Discover the EULAR Equity Fund

Training for New PARE Volunteers: Crafting Impactful Messages Together

20 new EULAR PARE volunteers came together in Brussels for an inspiring two-day training session. All arrived eager to learn, connect, and to strengthen their skills. 

The training was kicked-off by an introduction to EULAR, the organisation's overall set up and an overview on the manifold PARE activities. The training which followed was expertly led by Philly Graham from The Management Centre, who guided participants through a dynamic and interactive programme on how to communicate impactful messages. Volunteers explored their expectations for the training, identified what they needed in order to collaborate effectively, and discussed the challenges they anticipate, as well as the questions they often dread. There were exercises in shaping clear and compelling messages, starting with identifying and understanding your key messages and target audiences.

Volunteers left Brussels with new tools, deeper connections, and a renewed sense of purpose within the PARE community. 

Interested in joining the PARE Community? Working-Group volunteer opportunities open in March/April 2026.     

~By Stephanie Skeffington, EULAR PARE Editorial Board Member.

Putting a Human Face on Rheumatic Disease: Why Workplaces Must Change 

In October, I had the pleasure to represent our PARE community and to speak before the Members of the European Parliament, explaining how RMDs affect the ability to work.  

RMDs often begin with pain, yet pain rarely raises suspicion of a rheumatic cause unless assessed by a rheumatologist, leading to delayed diagnosis and late access to treatment. Their largely invisible nature fuels doubt among employers, as symptoms are not always outwardly visible.  

Flares, early-morning fatigue, and fluctuating functional capacity are difficult for others to understand, yet they significantly impact working life. I outlined why legislation should promote workplace prevention, enabling employers to involve occupational therapists to help prevent injuries and detect early signs of work-related conditions – an investment rather than a cost. While many speakers focused on figures and burdens, I reminded them that behind every number is a real person pushed out of the labour market, even though many could remain employed with small adaptions to their working environment. 

~By Fran Carreira, EULAR Advocacy Committee Member.

Best Practice Fair: Celebrating This Year’s Winners

At the PARE Conference 2025, three engaging activities from the PARE Community were chosen as the Best Practice Fair winners. The first place went to Hrönn Stefánsdóttir (Iceland) for her children's book about parents with an RMD. The award as runner up was received by Maranda van Dam for presenting a patient-led axSpA study from South Africa. The third place went to Young PARE representative Mariana da Silva Carvalho from Portugal for patients as student educators.  

~By Tanita-Christina Wilhelmer, EULAR PARE Editorial Board Member.

Reimagining Rheumatology: A conversation about CAR-T Therapy 

Anna Fryxelius interviews Professor Dr. Georg Schett, a leading international expert in rheumatology and immunology, to discuss how CAR-T therapy is reshaping our understanding of autoimmune rheumatic diseases — and why he believes a cure may now be within reach. 

 ~By Anna Fryxelius, EULAR PARE Editorial Working Group.

Reproductive Health in Early-Onset RMDs: A Crucial Dialogue for the Future 

Here is your chance to watch the latest PAED x PARE webinar! Explore reproductive healthcare in childhood-onset RMDs through a dialogue between people with lived experience and rheumatologists. Gain valuable insights into unmet needs and the challenges of transitioning from paediatric to adult care. Don't miss this important discussion! 

~By Jeanette Andersen, EULAR PARE Editorial Board Member.