LOOP Blog

Meet Desiree and read her story about the role stories and storytelling have had in her chronic illness journey, and how she plans to use them to advocate for others living with IBD.

It’s been nearly a decade since the first time I spoke as a patient advocate within ImproveCareNow. Joining ICN’s Patient Advisory Council (PAC) has given me a platform to share my story and vision for the future of IBD care. I have had the privilege of being in the PAC for over five years, serving as a PAC Co-Chair, and in my current role representing patients on ICN’s Board of Directors. This entire time, my patient advocacy has been for a medical audience, whether that be members of our ICN community or other learning health networks.

Recently, I had the opportunity to extend my patient advocacy to the policy world in hopes of making an even greater impact.

As 2026 begins and we wrap up another year together, let's pause and reflect on how our community of patients, caregivers, clinicians, researchers, collaborators and improvers continues to share seamlessly. Join us in recognizing and celebrating some of the wonderful resources and lived experiences shared by our community in 2025!

This was our version of an "ICN wrapped" and we initially shared it with our CIRCLE eNews list. Folks quickly let us know they liked it and found it useful so we decided to share it #InTheLOOP with the hope that it will reach even more people 💚💙

@ICNPatients collaborated with the ICN Social Workers & Psychologists (SWAP) group to create and share information about medical traumatic stress, including common symptoms, potential causes, coping strategies, advocacy statements, and a resource list. Take a PAC Moment to learn about medical traumatic stress from the patient perspective.

We are thankful for every story shared by our ICN community members! It is our hope that as more people stay #InTheLOOP with our posts, together we can:

💚 continue to bring critical awareness to chronic illnesses (like Crohn's disease and ulcerative colitis) that can be misunderstood because they are not always visible

💙 encourage people to connect with each other, to share information and support, so no one feels alone on their IBD journey

💚 build passion and momentum for our shared work of improving health & care of young people living with IBD

💙 keep the lines of communication open so we can all feel empowered to keep #TalkingAboutIBD

We look forward to sharing even more stories and perspectives in 2026. If you would like to share your story with us, here is a form you can complete or you can always contact us via our website.

In Imperfect, and still OK - Nutrition is Trial and Error, Marta reflected on partnering with pediatric IBD patients and their families to find a balance between following dietary "best practices" and holding space for kids and teens to learn and develop their own food autonomy through trial and error. In this follow-up post, Marta expands on how teens can still be OK even when their diet isn't "perfect," and gives some tools and techniques to build and reinforce balanced eating habits that can be sustained for a lifetime.

“We must find time to stop and thank the people who make a difference in our lives.” – John F. Kennedy

As a parent, advocate, and self-described IBD "researcher," Inbal has been on the front lines of her family’s IBD journey for a decade. But this isn't just one story, it’s two. Inbal's family has navigated two separate Crohn's disease diagnoses, years apart: one for her younger son in the pediatric system and one for her older son as a young adult. This gave her a unique, firsthand view of the striking differences between the two healthcare worlds. In this insightful Ignite Talk, Inbal shares her lived experience…the fear, the advocacy, the care, the community, the systems that worked, and the ones that failed, to show us the importance of sharing lived experiences and coming together. Her message is a vital one: the healthcare system must learn from families, not just about them, to bring this kind of supportive care to every IBD patient.

Be inspired by Inbal's #IgniteTalk 🔥

This summer, ICN staff invited community members to respond to the prompt "What ICN means to me..." and then mashed up the responses into a fun 3-minute video that was shared at our Fall 2025 Community Conference in September.

Meet Antonio and read his story about growing up with Crohn's and how it has evolved from a burden into something that is inspiring a future career in medicine.