LOOP Blog

We are excited to be hosting our Fall 2026 Community Conference in Detroit, Michigan from September 16 to September 18. We look forward to engaging with healthcare providers, patients, parents/caregivers, researchers and improvers from across ImproveCareNow to all teach and all learn, to share and develop new and innovative approaches to improve pediatric IBD care and outcomes, to further our research, and to build our community. Download our draft agenda and check out some highlights from this upcoming event ⬇⬇

Navigating health insurance shouldn't be a mystery! The NEW Insurance Toolkit was developed by @ICNPatients members, with input from the ImproveCareNow community, to help patients and families better understand the insurance process and their rights and options. Here's Leela's story about coproducing this important new resource!

Hi! My name is Nimishii and I'm a rising senior in high school. I was diagnosed with IBD at 13 and somewhere in the middle of the flares, the food restrictions, and the endless Googling of “what can I eat?” I discovered my passion for understanding inflammation and nutrition science.

When we look around, we quickly notice that virtually everything comes in different shapes and sizes - from the blueberries in the fridge to the pets in our home to our own bodies. Body diversity is the seemingly simple idea that each person’s body is unique; we may have bigger ears than our siblings, or a longer torso than our friends, or flatter feet than our peers at school. This is a normal and wonderful part of what makes us unique!

It can be tempting to use a chronic illness as a shield, but what happens when you choose participation over avoidance? For a long time, Justin found himself caught in the "blame game," using Crohn's disease as a "get out of jail free card" to excuse everyday challenges like oversleeping or missing college deadlines. This avoidance ultimately led to a mindset where he felt less capable in school, life, and his relationships because of his IBD. At our Spring 2026 Live Online Community Conference, Justin spoke about his realization that to move forward, he needed to stop blaming a part of himself he couldn't change. Instead, he chose to get involved with ImproveCareNow and the Patient Advisory Council (PAC), who helped Justin transform into a motivated and outgoing advocate. Through this active participation and his choice to help others, he discovered just how capable he truly is, finding success both as a PAC Co-Chair and in his collegiate endeavors. His #IgniteTalk is a powerful reminder that while we cannot change an IBD diagnosis, choosing to put away the blame game can help us realize our true potential.

Be inspired by Justin's #IgniteTalk 🔥

Sleep disturbance, pain, anxiety, depression, and fatigue are prevalent in adolescents and young adults with inflammatory bowel disease (IBD). These symptoms often present in co-occurring sets, known as symptom clusters. We aimed to identify distinct symptom clusters and factors associated with symptom profiles in adolescents with IBD.

Healthy nutrition is more than what’s on our plates, it’s often a lifeline, a form of empowerment, and a source of hope for families navigating chronic health conditions.

On May 19 the ImproveCareNow community celebrates World IBD Day as a dedicated time for #TalkingAboutIBD to raise awareness for invisible illnesses like Crohn’s disease and ulcerative colitis, break down isolation, and advocate for improvements in care and outcomes. Empowering those in our community who speak up, ask questions, and share their powerful personal narratives and lived experiences helps us all move toward a fuller understanding of how IBD shows up and affects the lives of people living with it. Today we would like to highlight how deeply this collaborative sharing drives our research, by highlighting a selection of our recent ICN Research Explained blog posts, which have been coproduced by parents and researchers. By making clinical research accessible to all, we reinforce the vital connection between community insights and medical advancements. Ultimately, World IBD Day is an active invitation for patients, families, clinicians, and researchers to work side-by-side to co-design the best standard of care and improve outcomes for kids with IBD.

These highlights provide a glimpse into the research, if you find a study that interests you, be sure to click on "Get #InTheLOOP" to read the full summary and insights.

Pediatric patients with active and quiescent inflammatory bowel disease (IBD) have known fatigue, but there is limited understanding of how fatigue is clinically assessed. This study explored perspectives of pediatric IBD patients and healthcare professionals (HCPs) regarding fatigue assessments.

My name is Leah, and I am a parent on the ImproveCareNow Parent/Family Advisory Council (PFAC) with two children diagnosed with Crohn’s disease. In 2016, our world turned upside down when both our children were diagnosed with IBD. We were nervous, scared, and overwhelmed facing not one but two Crohn’s diagnoses. Our wonderful GI, Dr. Suskind, discussed various treatment options, one of which included a dietary therapy approach that he had been newly researching called the Specific Carbohydrate Diet (SCD). I went home from the hospital armed with food lists and determination and got started right away on a new way of cooking.