IBD Community Engagement Efforts

A child’s experience with IBD extends beyond the exam room, the clinic, and the hospital. Accordingly, we believe that the best care includes the creation of a community that understands the unique circumstances of living with IBD. Our team is dedicated to building and maintaining a supportive IBD community. Here are a few examples of ways we are building community for and among our families with IBD.

IBD Family Advisory Council (FAC)

Our council meets once every other month to discuss ongoing projects, share and carry out ideas to improve care, and help us achieve our common goal of delivering the highest-quality care for every child. We believe this is best achieved by getting input from our IBD families, who are able to provide an insightful perspective on our health care delivery. If you are interested in joining the council, please contact us for more information.

IBD support groups

Is your child looking for ways to connect with other kids with IBD? We currently offer ongoing support groups for IBD patients connected to our clinic. These groups are divided into middle school and high school patients, are co-lead by the clinic’s Psychologist and Social Worker and meet monthly for eight sessions per calendar year, taking a break during the summer. Attending group is an excellent way for your child to meet peers with IBD, practice and discuss effective coping skills, and learn about how other kids deal with the challenges of having IBD. If you are interested in joining one of our groups, please contact your medical team for more information.

IBD parent community

This monthly parent support group meets virtually and provides our patients' parents with an opportunity to share about their journey with IBD and support one another. This support group plans to meet monthly over video chat and in person for social events once per quarter (as appropriate per hospital health/safety guidelines). This collaboration with the Crohn’s and Colitis Foundation is an ongoing and open group, facilitated by Stanford IBD Clinic staff, and is an amazing pathway to emotional support, helpful information, community, and additional perspectives. Please let us know if you are interested in joining by emailing IBDCeliac@stanfordchildrens.org!

Community events

Connecting those who share similar experiences is the basis for our community outreach and events. Sharing and learning from each other’s life experiences can be supportive and healing. Previous and future events include mental health workshops, educational sessions on treatment options, cooking classes, yoga and meditation demonstrations, group picnics, prepping for college, and more. Contact us to get updates on upcoming events.

Peer-to-peer program

Sometimes it can be vital to connect directly to another patient or parent at times of need. We have found it to be helpful to connect our newly diagnosed patients and families to non-medical supports during overwhelming times. We offer to help connect you and/or your child to other supportive parents and patients within our clinic for added perspective, community, emotional support and possibly friendship. Please let us know if this could be beneficial to you and/or your child.

To learn more about living with IBD, visit Patient and Family Resources.