In the ImproveCareNow Network, there is a saying "to share seamlessly and steal shamelessly". It is understood that when clinicians, researchers, patients and families work collaboratively - sharing what has been learned and developed - improvements in care and health for kids living with IBD can be accelerated. Resources shared on this page have either been created & co-produced by the ImproveCareNow Community (and labeled with a ⭐ ) or recommended by an ICN committee as important to share seamlessly.
This information does not constitute medical advice and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. The full disclaimer applies to the tools and documents posted on this page.
The Accommodations Toolkit includes details about accommodations and ADA laws, specific information about academic (K-12, testing & college), workplace and public accommodations, as well as patient perspectives on setting up and utilizing accommodations. One-page highlights of this resource are available in English and Spanish.
⬇️ Accommodations Toolkit - English
⬇️ Accommodations Highlight - English (1 page highlight)
⬇️ Accommodations Highlight - Spanish / Español (1 page highlight)
The Caregiver Coping Resource has been coproduced by members of ImproveCareNow (ICN) and the Autoimmune Liver Disease Network for Kids (A-LiNK), including the ICN Parent/Family Advisory Council (PFAC), ICN Social Workers & Psychologists (SWAP) group, and A-LiNK Connections. This 160+ page resource is broken up into helpful chapters, including how to navigate the joys & challenges of parenting a child with a chronic condition, how stress impacts health, the impact of a chronic illness on siblings, and much, much more!
⬇️ Caregiver Coping Resource - English
⬇️ Caregiver Coping Resource Handout - English (1 page printable flyer)
🔗 Access Caregiver Coping Resource Links
💫 Get #InTheLOOP with Caregiver Coping Resource stories on the ICN blog
The College & IBD Toolkit helps make the college-transition process less stressful. Whether you are finishing high school, are already in college, or are supporting someone who is making this transition, you can benefit from information about choosing the right school, preparing for college, and surviving classes, dorms, and dining with IBD.
⬇️ College & IBD Toolkit - English
⬇️ College & IBD Highlight - English (1 page highlight)
💫 Get #InTheLOOP with stories about college on the ICN blog
The following resources are recommended by the ImproveCareNow Clinical Committee. These handbooks & visit planners are tools to help you learn more about IBD and to plan for your next visit with your doctor and multi-disciplinary team.
- Health Maintenance for Pediatric IBD Patients - Digital Pamphlet
- Effective Partnering - Treat to Target form - Digital form to help you plan your visit at your next doctor's appointment
- Partnering With Your Doctor - Webpage
The Finding A Mental Health Provider Guide was co-produced by the Social Worker and Psychologist (SWAP) group and members of the ImproveCareNow Community. It is a four-page guide for families and youth living with IBD.
The guide includes detailed information about the importance of addressing mental health needs as part of comprehensive IBD care, how to find and work with a mental health provider, and what to expect during mental health counseling.
Download The Finding a Mental Health Provider Guide - English
Download The Finding a Mental Health Provider Guide - Spanish
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The Ostomy Toolkit was created by the ImproveCareNow Patient Advisory Council's Advocacy Taskforce in collaboration with the whole ICN Community. The toolkit is designed for and by pediatric patients who have had, or are having, ostomy surgery (resting or permanent ostomy). It includes tips, tricks and personal stories about school, travel, supplies, playing sports, clothing choices, and how to tell friends. It's an extraordinary tool to help lessen fears about ostomy surgery and life with an ostomy, and to promote awareness and understanding.
⬇️ Ostomy Toolkit - English
Invisible illnesses, like Crohn's disease and ulcerative colitis, don't take time off for the holidays. Learning about what your friends and family members who live with IBD may be experiencing is a powerful way to demonstrate your caring and support, and to also include them in holiday plans in ways that work for them. Below we have shared resources related to IBD and special occasians.
- Holiday Stress & Eating - Blog post
- What I Wish you Knew about IBD and Holidays - Blog post
- What I wish you Knew about IBD and Holidays - Printable PDF resource
- Ramadan Tips for Fasting - Downloadable resource; in collaboration with the Crohn's & Colitis Foundation & South Asian IBD Alliance
As healthcare providers, we want our young adults to successfully navigate the health care system as independent individuals. The process of transitioning from pediatric to adult-centered health care should be seamless, and should occur when the adolescent or young adult is in a stable place, both physically and emotionally.
The Transfer Toolkit is a 10-page document collaboratively created in 2018 by the Transition-Transfer Innovation Community and reviewed by the Patient Advisory Council and Clinical Practice Committee. Developed by patients and clinicians together, The Transfer Toolkit includes sections that cover important skills and considerations for adolescents approaching the point of transfer to adult care, self-advocacy tips, and more. Each section also includes relevant patient narratives to provide encouragement and real-life advice.
LOOP articles
The purpose of the Travel Toolkit is to share personal stories about traveling with Crohn’s disease and ulcerative colitis, answer questions, and identify tips and techniques that can make travel easier, safer and more comfortable. It is made up of direct quotes from 17 Patient Advisory Council members about their travel experiences; what works and what doesn’t work. The responses are grouped into sections about general traveling experiences, medications, nutrition and stress & general tips. After each section there is a summary with key takeaway information.
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NEW in 2026! The Insurance Toolkit has information about insurance compiled by members of the Patient Advisory Council with input from members of the ImproveCareNow Community. Topics include an overview of insurance types, plans, and scenarios; guidance on choosing an insurance company; and information about your rights as a patient regarding insurance.
⬇️ Insurance Toolkit - English
⬇️ Insurance Toolkit Handout - English (1 page printable flyer)
💫 Get #InTheLOOP with stories about insurance on the ICN blog