Launched in September this year, IBD-VIBES (Inflammatory Bowel Disease: Voices, Inspiration, Building Education & Support) is a new initiative dedicated to supporting people living with IBD. Its mission is to create a community, empowering individuals by sharing reliable and up-to-date information and providing a space for people living with IBD to come together for peer-to-peer support. By sharing their experiences, members of the network can help shape future research and the care they receive. The network’s activities and events will be driven by the priorities of patients, family and friends.
On 26th November, IBD-VIBES hosted its inaugural event, “Understanding IBD”. Delivered by Professor Chris Lamb from the Informatics and Precision Care for an Ageing Population Research Theme, the event explored the knowns and unknowns of IBD.
Chris outlined the common but often hidden symptoms of IBD and other conditions associated with IBD such as psoriasis and arthritis. He also discussed what IBD care looks like in the UK, and how awareness is being raised about the condition to help improve the care patients receive.
What causes Crohn’s and colitis, why do different people experience different symptoms and inflammation and why do some people respond better to treatment? Chris introduced two flagship research studies being led from Newcastle which aim to answer these questions, IBD-RESPONSE and Open-IBD. He highlighted the importance of patient involvement to help shape both care and research and why networks like IBD-VIBES play a vital role in this.
The event concluded with a lively Q&A session, covering topics from diet to genetics. Over 30 patients, family members and healthcare professionals attended in-person and online with 100% of attendees reporting they had learned something new about IBD and 100% saying they would recommend joining IBD-VIBES to other patients.
Professor Chris Lamb said: “It was wonderful to have our first IBD-VIBES event. It was great to meet in a non-clinical setting and the questions, insights and shared experiences were powerful. Thank you to all who attended in person or online - we are really looking forward to more events in 2026 and beyond!"
About the IBD-VIBES network and event, attendees said:
“I think the power of community and shared knowledge is so strong. Knowing 'it’s not just you' makes a big difference” “for a forum such IBD Vibes to be set up is a fantastic enhancement for patients to become more knowledgeable on the disease.” “learning about IBD from the very people responsible for your care is a rare opportunity and I felt very privileged to be given the opportunity.” “I was diagnosed 40 yrs ago when there was little information or support…Today's openness empowers patients to advocate for their care and their ability to participate in work and life generally.”
“I think the power of community and shared knowledge is so strong. Knowing 'it’s not just you' makes a big difference”
“for a forum such IBD Vibes to be set up is a fantastic enhancement for patients to become more knowledgeable on the disease.”
“learning about IBD from the very people responsible for your care is a rare opportunity and I felt very privileged to be given the opportunity.”
“I was diagnosed 40 yrs ago when there was little information or support…Today's openness empowers patients to advocate for their care and their ability to participate in work and life generally.”
Dr Chao Dong said: “I really enjoyed organising the event as part of the IBD-VIBES team. A lot of thought and effort went into making it happen, and it was fantastic to see people attending and showing genuine interest. The atmosphere was lively and positive throughout. Personally, I found it empowering—even as a clinician—to spend time with people outside of the usual clinical setting and connect with them in a different way. This is just the beginning—we’re excited to plan more events and grow this community. Thank you to everyone who attended and supported us!”
If you are interested in joining the IBD-VIBES mailing list and hearing more about future activities, please contact This email address is being protected from spambots. You need JavaScript enabled to view it.