Patient Engagement in PerPrev-CID

In PerPrev-CID, meaningful collaboration with people affected by chronic inflammatory diseases (CID) is fundamental to our mission. That’s why we actively bring together the diverse voices of those living with rheumatoid arthritis (RA) and inflammatory bowel disease (IBD), ensuring patient involvement remains at the heart of everything we do. To bring this commitment to life, PerPrev-CID prioritises:

Strong collaboration: patient research partners (PRPs) work side by side with researchers, clinicians, and other stakeholders.

Every stage, every step: people living with or at risk of RA and IBD are actively involved throughout the project.

Shared knowledge: through dialogue and exchange, we aim to advance RA and IBD research and care.

Patient Research Partners

Patients are not just participants in PerPrev-CID, they are partners. To ensure their perspective is embedded in every aspect of the project, a Patient Advisory Panel (PAP) was established. The PAP brings together patient research partners (PRPs) from EULAR (European Alliance of Associations for Rheumatology) and IFCCA (International Federation of Crohn’s & Ulcerative Colitis Associations).

With their lived experience and expertise, PRPs provide ongoing guidance, helping to shape decisions, review research activities, and collaborate closely with researchers, clinicians, and other stakeholders. Discover the perspectives and voices of our patient representatives.

Jane Giudice

EULAR PARE

Malta

Can you briefly introduce yourself?

My name is Jane Giudice, and I am based in Malta. My background combines lived experience with chronic illness and a strong commitment to patient advocacy. Living with Rheumatoid Arthritis has made me deeply aware of the importance of early detection, prevention, and patient-centred care. Being part of the PerPrev-CID project as a member of the Patient Advisory Panel is especially meaningful to me because it allows me to contribute my insights to research aimed at preventing or reducing the impact of chronic inflammatory diseases. This project reflects my core belief that prevention can change lifelong outcomes. By sharing my experience, I hope to help shape research that is both scientifically robust and closely aligned with real patient needs, emphasising the vital role of patient voices in advancing meaningful research and prevention strategies.

How did your diagnosis shape your engagement in research or advocacy?

I was diagnosed with rheumatoid arthritis after years of symptoms that I struggled to understand. These conditions have become part of my everyday life – affecting how I move, how much energy I have, and even how I plan my day. Mornings start with stiffness that makes simple tasks feel overwhelming; other days bring unpredictable pain or fatigue that forces me to slow down, even when I don’t want to. Living with these diseases can be frustrating, isolating, and emotionally draining, especially when symptoms flare without warning. But these experiences have also given me strength, resilience, and a deep sense of purpose. They have taught me the importance of listening to my body, seeking support, and recognising that invisible illnesses still carry a very real weight. Most importantly, they’ve shown me how essential it is for research to reflect the lived reality of those it aims to help. My journey is what motivates me to be involved in research and advocacy. I want to ensure that prevention, early intervention, and patient-centred care are shaped by real voices and real experiences – so that others may face fewer obstacles and feel more understood on their own journeys.

How did you first become involved in patient-centred research?

I first became involved in patient-partnered research through my growing interest in how lived experience can meaningfully shape scientific projects. I realised how important it is for patients to have a voice in research that directly affects their lives. This led me to the EULAR Online Course for Patient Research Partners, which provided a strong foundation in research methods, principles of patient involvement, and effective collaboration with researchers. Completing the course strengthened my confidence and deepened my commitment to advocacy. It helped me see how personal experience can be transformed into knowledge that supports better studies, clearer priorities, and more patient-relevant outcomes. From there, I continued engaging with organisations and initiatives that value patient perspectives, eventually leading me to join the PerPrev-CID project, where I can contribute meaningfully as part of the Patient Advisory Panel.

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Sāra Zdanovska

Latvijas Krona un Kolīta Slimnieku biedrība (LKKSB)

Latvia

Can you briefly introduce yourself?

My name is Sara and I am from Latvia. I work as a Product Category Manager at FYUL (ex - Printful, Latvia’s first unicorn startup), where I focus on project management, product development and assortment analysis. Alongside this, I am building my own startup in women’s wellness. I have experience organizing and leading youth-focused initiatives, including volunteering with the Parliament of Latvia Youth group, leading the Student Association at Stockholm School of Economics in Riga, and organizing large-scale events and festivals for young people.

How did your diagnosis shape your engagement in research or advocacy?

I was diagnosed with Crohn’s disease in 2019, during my first year at university. The diagnosis forced me to quickly adapt to physical, emotional, and social changes that were often invisible to others and difficult to explain. Over time, this experience showed me how isolating chronic illness can be and how important it is for patients to be truly heard and understood. This motivated me to engage in patient advocacy and community-building, where shared experiences help reduce isolation, amplify patient voices, and ensure that research and care better reflect the realities of living with the disease.

How did you first become involved in patient-centred research?

I became involved with LKKSB in 2021. My journey began with IFCCA’s Youth Academy, which offered an opportunity to learn, connect with other young people living with IBD, and understand the value of patient engagement. This experience led me to join IFCCA’s Youth Group and later become a board member of LKKSB. Through this path, I realized how rewarding and essential patient advocacy is, particularly in building strong, supportive networks for people with similar health challenges.

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Vasiliki-Rafaela Vakouftsi

IFCCA

Greece

Can you briefly introduce yourself?

My name is Vasiliki-Rafaela Vakouftsi and I am based in Greece. I have a background in Psychology, with a strong interest in the connection of chronic illness and psychology and currently working at IFCCA. I am motivated by continuous learning and enjoy applying my skills in patient advocacy.

How did your diagnosis shape your engagement in research or advocacy?

I was diagnosed with Crohn’s disease in 2013 and this experience significantly shaped my perspective on healthcare and research. Navigating the diagnostic process and ongoing care highlighted the importance of patient-centered approaches, clear communication, and evidence-based decision-making. As a result, I became more engaged in research and advocacy, aiming to contribute patient insights, support improved healthcare practices and help ensure that research priorities align with real patient needs.

How did you first become involved in patient-centred research?

I first became involved in patient-partnered research through my interactions with patient organizations and healthcare professionals, where I learned about opportunities to contribute the patient-cantered care led me to engage with IFCCA. Over time, this involvement developed into active participation in research discussions, advocacy efforts and projects aimed at strengthening the role of patients as equal partners in research.

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Alexandra Mitria

ASPIIR

Romania

Can you briefly introduce yourself?

My name is Alexandra, I am from Bucharest, Romania and I am an accountant. I do voluntary work for my national IBD association, and I am the Youth Leader of IFCCA.

How did your diagnosis shape your engagement in research or advocacy?

I got diagnosed with Crohn’s disease in 2022, but my symptoms started in 2019. After my diagnosis, I really wanted to make a change and help other patients better navigate their IBD journey and show them that we can live a happy life even though we have an incurable disease.

How did you first become involved in patient-centred research?

After my strong involvement in my national association ASPIIR, I was introduced to IFCCA in 2024 to be part of the Youth Group. I am very grateful for what IFCCA is doing to help all IBD patients across the world and I wanted to be part of that change. This year, my colleagues chose me to be their leader. Together, we are planning to help every young patient living with IBD.

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Cora Wallach Sanches

DII BRASIL

Brazil

Can you briefly introduce yourself?

I'm Cora, from Brazil. I am a product designer, with a master’s degree in design. I have an IBD since 2016. I am a volunteer at the National Patients Association DII BRASIL and I'm the president of the Brazilian Youth Group.

How did your diagnosis shape your engagement in research or advocacy?

I was diagnosed with Ulcerative Colitis at 18, when I had just started university. It took me a long time to seek help, and that worsened my health a lot. As a volunteer I wish to help spread the word about IBD, so people don't wait too much to look for help and get a diagnosis.

How did you first become involved in patient-centred research?

I started volunteering at DII BRASIL, our Patients Association, through that I learned about IFCCA and then EULAR.

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Patient Organisations

In PerPrev-CID, patient organisations are key to empowering patient research partners, ensuring they are well-supported, confident, and actively involved in all research activities. The patient organisations in the project make sure that patient research partners feel prepared and are supported at every step. The involved organisations are:

• International Federation of Crohn`s And Colitis Associations (IFCCA)

  IFCCA plays a pivotal role in the PerPrev-CID project, focusing on patient engagement, advocacy, and collaboration to improve early diagnosis and intervention in Inflammatory Bowel Disease (IBD). As a key partner, IFCCA contributes to the development of patient-centered tools and strategies, ensuring that the voices and experiences of IBD patients are integrated into the project’s framework.

  One of our most important tasks is to lead the establishment of the Patient Advisory Panel, which will provide valuable insights and feedback on the project's activities. We are also involved in the organization of workshops and the dissemination of findings to relevant stakeholders, including patients, healthcare providers, and researchers. IFCCA is actively participating in the development of communication strategies to raise awareness about the project and its impact on IBD care. Additionally, we collaborate with other partners to ensure that the project addresses the real-world challenges faced by IBD patients and contributes to improved care pathways across Europe.

  Learn more about IFCCA’s mission and their team in PerPrev-CID.

• The European Alliance of Associations for Rheumatology (EULAR)

  Building on its extensive expertise in patient–researcher collaboration, EULAR plays a central role in ensuring meaningful patient involvement and effective communication throughout the PerPrev-CID project. In partnership with EFCCA, EULAR co-leads the establishment and coordination of a Patient Advisory Panel composed of Patient Research Partners (PRPs). This panel actively contributes to research design, data collection, product development, patient recruitment, and communication strategies, ensuring that patient perspectives are integrated into every phase of the project. EULAR’s role is essential for guaranteeing that the research remains ethical, relevant, and beneficial for patients. By embedding patient input from the outset, EULAR helps improve the credibility and effectiveness of the research, ensuring that outcomes are directly aligned with the needs and priorities of people living with RA. The creation of the Patient Advisory Panel provides a structured platform for patients’ voices to be heard, shaping the project in ways that lead to tangible benefits in daily life.

  Alongside its work on patient involvement, EULAR will play a key role in dissemination, exploitation, and communication. With a proven track record at the European level, EULAR ensures that project outputs are accessible and reach the right audiences – patients, healthcare providers, policy makers, and the broader public. Its communication activities integrate patient perspectives and leverage its wide-reaching channels such as member organisations, patient associations, social media, newsletters, press releases, events, and the EULAR Congress.

  By combining patient-centred research with strong dissemination and communication strategies, EULAR maximises the impact, uptake, and sustainability of PerPrev-CID’s results across diverse stakeholder groups.

  Learn more about EULAR’s mission and their team in PerPrev-CID.