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What inspired you to become a Patient Research Partner (PRP) with the STRATA-FIT project?

Living with juvenile arthritis has been an unpredictable journey. After trying multiple medications, navigating side effects, and feeling like my voice wasn’t always heard in treatment decisions, I wanted to help change the system from within. When I heard about STRATA-FIT’s focus on personalized approaches for people like me, I knew I had to get involved. It felt like a chance to use my experience to improve care for others going through the same struggle.

How would you describe your experience being involved in STRATA-FIT so far?

It’s been empowering. I feel like a valued member of the team—not just a patient, but a partner. I’ve learned so much about how research works behind the scenes, and I’ve been able to bring the patient perspective into conversations about study design, communication materials, and what outcomes actually matter to us. There’s a real sense of collaboration and respect.

What are your hopes for what STRATA-FIT will accomplish—for yourself or for others living with D2T RA?

I hope STRATA-FIT shows that there’s no one-size-fits-all solution for treating RA—especially for people with complex or stubborn disease. I want the project to pave the way for care that is truly individualized, taking into account patient goals, lifestyle, and lived experience—not just lab results. Ideally, it will also help clinicians feel more supported when making tough treatment decisions.

What’s one thing you wish more people—whether the public, healthcare professionals, or researchers—understood about living with D2T RA?

That it’s not just about joint pain. D2T RA affects your energy, your mental health, your relationships, your ability to work or plan your future. It’s incredibly isolating when treatments don’t work and you feel like a “difficult case.” I wish there was more understanding that managing this condition takes a toll on every part of your life, not just your body.

If you could share a message with researchers or clinicians working on RA treatments, what would it be?

Listen to your patients. Even the best-designed treatments won’t work if they don’t fit into someone’s life. Ask us what matters most. Maybe it’s less fatigue, or being able to do school work, or managing side effects better. Outcomes should be about more than inflammation markers. They should reflect the goals of the person living with RA.

What advice would you give to other patients thinking about getting involved in research or patient advisory roles like this one?

You don’t need a science degree or special training but just your lived experience and a willingness to share it. Your voice matters more than you think. Getting involved in research has helped me feel less powerless and more connected to a community of people who care about making things better. If you’re ready, take the leap. Your perspective could shape the future of care.

October 2025

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Funded by the European Union (grant agreement no. 101080243). Views and opinions expressed are, however, those of the author(s) only and do not necessarily reflect those of the European Union or the European Health and Digital Executive Agency. Neither the European Union nor the granting authority can be held responsible for them.
The project has also received funding from the Swiss State Secretariat for Education, Research and Innovation (SERI) and from Hungary’s National Research, Development and Innovation (NRDI) Fund.