Below, you can access our educational handouts, peer-reviewed publications, and video resources. Scroll down to find opportunities for clinicians to get involved in our work, a directory to help you connect with patient research partners, and resources to share with your young adult IBD patients.
If you are interested in participating and/or receiving updates about our Delphi Consensus on Young Adults with IBD, please complete this form.
Resources for Clinicians
Our CCYAN team/community is comprised entirely of young adult patients with IBD, many of whom also work in healthcare (e.g., medical students, physicians, social workers, dietitians, physician assistants, nurses, researchers, and more). In collaboration with multidisciplinary clinicians and researchers, CCYAN hosted a yearlong guided discussion series (our Roundtable on Young Adults with IBD) to focus on aspects of young adulthood and IBD where patients often need additional support. Following these roundtable discussions, we created the below resources to help clinicians and trainees to learn how to better serve the unique needs of young adults with IBD!
Educational Resources: Challenges and Recommendations in Caring for Young Adults with IBD
Each of the below handouts focuses on one aspect of young adulthood and IBD. Please feel free to share these handouts with colleagues, incorporate them into continuing education initiatives, or use them as a starting point for discussions!
These tables synthesize challenges and recommendations for improving the lives of young adults with IBD in different healthcare domains:
The “Patient-Clinician Interactions” sections provide clinicians with tangible strategies (e.g., phrases or resources) to use during medical appointments with young adult IBD patients.
The “Research” sections highlight opportunities for clinician-scientists and other researchers to improve existing research and propose future directions.
The “Systems” sections provide clinicians, leaders, and administrators with opportunities to improve care at the clinic, departmental, hospital, and systems-wide levels.
Peer-Reviewed Publications
The proceedings from our CCYAN Roundtable on Young Adults with IBD were featured in a Special Issue of the peer-reviewed journal Health Care Transitions. Mirroring the topics above, each of these publications highlights a different aspect of the experience of young adult IBD patients.
In addition to the Special Issue of the peer-reviewed journal Health Care Transitions (described above), our Roundtable and subsequent publications were featured in a Cleveland Clinic article by Dr. Sandra C. Kim, Chief of Pediatric Gastroenterology, Hepatology & Nutrition at Cleveland Clinic Children’s.
Video Resources
These 30 to 60-minute didactic videos from our CCYAN Roundtable on Young Adults with IBD feature a clinician and a young adult with IBD. Together, they discuss the current landscape of clinical care, patient experience, and research at the intersection of young adulthood, IBD, and other areas (e.g., sexual and reproductive health, higher education).
Opportunities for Clinician Involvement
We are looking for clinicians from a wide-array of disciplines within IBD spaces to participate! Participation opportunities include virtual, anonymous surveys and expert panel discussions (focus groups).
If you are interested in participating and/or receiving updates about the Delphi Consensus on Young Adults with IBD, please complete this brief form.
Directory Resource: Engaging IBD Patients in Research
As a community-led organization, we are strong believers in the power of patient-engaged research as a way of advancing health equity and ensuring outcomes are meaningful to patients. We know that it can be challenging for providers and researchers to find and/or connect with patients who are interested in joining advisory boards, research teams, or other opportunities for collaboration. To bridge this gap, we’ve created a working directory of young adult IBD patients with a wide range of experiences and expertise (past/current CCYAN Fellows), who are interested in getting involved in IBD-related projects.
Click here to access our Crohn’s & Colitis Young Adults Network Directory, or go to: https://tinyurl.com/directoryCCYAN.
Resources to Provide Your Young Adult IBD Patients
Living with IBD can be an isolating experience with many psychosocial challenges. CCYAN has created several patient-facing resources and opportunities (described below), which we encourage you to provide to your patients.
Virtual Peer Support Groups
CCYAN and its parent organization, Generation Patient, host several community-led peer support groups each month. These groups provide a space for patients to discuss their experiences navigating young adulthood with chronic illness, and hear from other young adult patients dealing with similar challenges. The IBD Virtual Peer Support Groups each focus on a different IBD-related topic. Our other support offerings include ‘Higher Education Support Groups’ and ‘General Support Groups,’ which are open to young adults living with any chronic medical condition.
Blogs and Videos
To normalize experiences and help others feel less alone, our CCYAN Fellows have created blog posts and videos on a variety of topics, including navigating higher education, social life, coping with treatments and procedures, and more.
Leadership Programming - CCYAN Fellowship
The Crohn’s and Colitis Young Adults Network (CCYAN) International Fellowship is a year-long program by and for young adults with IBD. The CCYAN Fellowship brings together six young adults with IBD from around the world, and provides opportunities to learn about and engage with IBD advocacy. Our fellows meet monthly to hear from IBD experts, discuss topics relevant to young adulthood/IBD, and engage in monthly community involvement opportunities to share about topics they’re passionate about.
We are in our seventh year of the CCYAN Fellowship – you can learn about our past fellows and read their stories here! Applications are now closed for our 2025 CCYAN Fellowship, but keep an eye out for 2026 applications (released in July).