As PAC member, Leela, wrote in her introductory post to the ICN blog, “It makes me feel more confident knowing that I’m not the only one struggling and there are other people like me.” Support and connection that allows people to express themselves, to be seen and understood, and to feel less alone is so important. In the interest of ensuring everyone looking for connection and support along their IBD journey can access it, we are highlighting IBD Kidz – a Crohn’s & Colitis Foundation program offering “age-appropriate support groups just for kids and teens living with IBD. These groups help young patients connect with peers, feel less alone, and gain confidence in managing their condition.”
During our January Open House, Elizabeth Y from the Crohn’s & Colitis Foundation gave a presentation about IBD Kidz. Here’s what we learned:
Important information for families about IBD Kidz:
- IBD Littles is for pediatric IBD patients ages 5 to 10 years
- IBD Middles is for pediatric IBD patients ages 11 to 14 years
- Meetings are held monthly and last one hour
- All meetings are virtual, so kids can attend the group that works with their availability not just based on their location
- Attendance is FREE
- Parents cannot attend meetings but are welcome to be in the room with their child (please do not come on camera or participate unless asked by the facilitator)
👀 The ICN Patient Advisory Council (PAC) is for pediatric patients 14 and up. This makes IBD Kidz a great option for younger patients seeking support and connection starting at earlier ages.
How to find and join an IBD Kidz meeting:
- Visit the IBD Kidz Search Page, then scroll down to see all available meetings
- Click on meetings you/your child are interested in to view dates/times
- Once you have chosen a meeting, click to Contact Group Facilitator
- Facilitators will reply with meeting info, meeting link, and guidelines
- Join the meeting!
What IBD Kidz attendees can expect during meetings:
- Kids meet peers who understand their journey
- Kids feel less alone
- Discussion is guided by trained volunteers with an IBD connection
- Kids have a safe space to share experiences
- Allocated time at the end of the meeting for parent questions
Read what real facilitators have to say about IBD Kidz:
“I have had the honor of facilitating West IBD Kidz Littles for over a year which has been deeply meaningful. As a facilitator, I have the privilege of fostering a safe space where children can express their fears, frustrations, and victories with peers who truly understand. Watching them find their voices and show genuine compassion for one another has been profoundly moving. This role has taught me how powerful it is when children feel that their experiences and feelings matter and has deepened my understanding of the unique emotional and social needs of children living with IBD. I am continually inspired by their ability to find joy, humor, and hope even when experiencing difficulties. Their strength reminds me every day of the healing power of connection and community when navigating a chronic illness.” – Yadira, Pacific Littles
“Co-facilitating meetings with IBD Kidz has been a joy to be a part of. It has been wonderful to watch the kids grow more comfortable speaking up, sharing their experiences, and supporting one another. Seeing their confidence and sense of belonging grow as they realize they are not alone has reinforced the importance of community and connection.” – Jack, Northwest Middles
“I was diagnosed with Crohn’s disease at age seven and spent much of my childhood feeling isolated. Attending Camp Oasis helped me feel understood, but that sense of confidence faded during the rest of the year. I am proud to volunteer as a facilitator for IBD Kidz Littles and provide year round support. Our goal is simple: build confidence and have fun. Seeing these children grow more confident, form friendships, and support one another reminds me why this work matters and gives me hope for the future of the IBD community.” – Kirsten, Central Littles
ℹ️ If you are interested in applying to become an IBD Kidz volunteer/facilitator, visit this link to review important information like a job description, code of conduct and key terms, as well as to submit your application.
Everything we do in ImproveCareNow is magnified by the efforts of thousands of improvers! No action is too small; here are some ways to get started:
💚 Join the Patient Advisory Council (pediatric patients with IBD who are 14+)
💙 Join the Parent/Family Advisory Council (parents/caregivers of young people with IBD)
💚 Participate in our Current Research Opportunities (subject to eligibility)
💙 RSVP to join us at one of our upcoming ICN events
💚 Subscribe to blog updates to stay #InTheLOOP with our IBD stories
💙 Download, use & share our free, co-produced IBD resources
💚 Connect with our welcoming & supportive pediatric IBD community and receive IBD resources, community stories, and ICN updates & opportunities
💙 Donate to ImproveCareNow – we are proud to use every dollar donated to advance our mission!
Our mission is to transform the health, care and costs for all children and adolescents with Crohn’s disease and ulcerative colitis (Inflammatory Bowel Disease or IBD) by building a sustainable collaborative chronic care network.
