Living with IBD and RA

Living with chronic inflammatory diseases brings daily challenges that touch every part of life – from getting through a workday to traveling or staying socially active, all complicated by sudden flare-ups, pain, and fatigue. At PerPrev-CID, we believe it’s essential to share and understand these real experiences. By giving a voice to those affected, we aim to empower individuals, break taboos, raise awareness, and ultimately improve support, care, and communication for the entire community.

Voices from the Community

Discover the voices of our community – sharing why involvement matters, their hopes for research, and how lived experiences can drive better care and understanding. These personal perspectives provide invaluable insights that help shape research to truly meet the needs of those affected.

Our experiences offer insights that science alone cannot capture. When patients and researchers work together, we advance understanding, inspire innovation, and create a future where care becomes more compassionate, preventative, and empowering.

Jane Guidice

Patient Research Partner living with rheumatoid arthritis

Patients bring the real story to research - beyond test results. It’s not just blood tests, inflammation, and prescriptions, but tummy aches, steroid moon faces, restroom sprints, and learning new body limits. Talking about this leads to better, more human care.

Sāra Zdanovska

Patient Research Partner living with Crohn’s disease

Patient involvement in research ensures that studies address real needs and priorities. By integrating lived experience with scientific expertise, research becomes more relevant, ethical and impactful.

Vasiliki-Rafaela Vakouftsi

Patient Research Partner living with Crohn’s disease

From my perspective, patient involvement matters because we understand what every patient’s needs are. With that information when can try to give them a better life by helping them better cope with their illness. You can imagine that every patient’s dream who has an incurable disease is to get cured. And I really think this thing will be achievable in the future with every patient’s help.

Alexandra Mitria

Patient Research Partner living with Crohn’s disease

As a designer, I see the delay in diagnosis as a broken user journey. Research can help us redesign this path, turning our lived experiences into data that speeds up detection and prevents unnecessary suffering.

Cora Wallach Sanches

Patient Research Partner living with Ulcerative Colitis

Support and Information

Discover EULAR’s and IFCCA’s member organisations and highlights from the community, offering education, research, and real stories to help people with RA and IBD learn, connect, and find support.

Find national EULAR PARE member organisations across Europe

Find IFCCA's member organisations representing the IBD Community worldwide

Discover the voices of the IBD Community in IFFCA's yearly magazine

Learn about the EULAR PARE Community and how to become a part of the network