Advancing DEI Within the IBD Community

 

Community Partners at our Northern Ohio Chapter’s Annual Gala

 

For the general population, it’s challenging to reach an early and accurate diagnosis of IBD, and this is only amplified for underrepresented communities. To help combat this health equity issue, we have partnered with members of these communities to develop and deliver tailored offerings in our two focus areas: Education, Support & Advocacy, and Research & Care.

 

The DEI Patient and Caregiver Advisory Committee assists in developing and reviewing programs, initiatives, and resources put together by the Foundation for our Education, Support & Advocacy efforts – see below for more program details. As it relates to Research & Care, the Foundation’s National Scientific Advisory Committee (NSAC) has a Diversity and Inclusion Subcommittee that advises on DEI issues within the IBD healthcare community and the NSAC itself, including incorporating inclusive practices and increasing representation and participation of healthcare professionals, patients, and volunteers who are of diverse backgrounds.

 

 

Education, Support & Advocacy

 

“At the Crohn’s & Colitis Foundation, we are intentional about making sure our digital resources reflect the diverse voices and experiences of patients and caregivers, and why our support programs are designed to meet people where they are. Right now, we are conducting a needs assessment survey to better understand and support the unique experiences of the LGBTQIA+ IBD community. This work is deeply meaningful to me, because it ensures that every person impacted by IBD sees themselves in our mission and knows that they belong.”

Catherine Soto, MPA - Associate Vice President, Patient Education & Support

 

Black/African American and Hispanic/Latino Community Education Programs

Session moderator and Chapter volunteer, Toya Williams, and presenter and local Gastroenterologist, Dr. Dorian Jones, at our Michigan Chapter’s Morning of Culture event in Detroit.

Both the Black/African American and Hispanic/Latino populations are severely and negatively impacted by inequities throughout the healthcare system. “Morning of Culture” and “Morning of Community” were co-constructed with the Black/African American and Hispanic/Latino communities, respectively, to address these systemic inequities.

 

Bringing together patients and caregivers with healthcare professionals from these communities, our customized programs provide attendees with helpful resources on the latest research, treatments, and therapies for IBD.

 

If you are interested in attending or supporting the 2025 events below, please reach out to Caneka McNeil Moore, Ed.D., the Foundation’s Associate VP, Education & Diversity Engagement.
 

Session presenter, professor and local Gastroenterologist with UT Health San Antonio, Dr. Juan Echavarria, at our South Texas Chapter’s Morning of Community event in San Antonio.

Resources for Underrepresented Communities

The following are dedicated resources we have created to support the specific needs of underrepresented communities. We encourage you to share these broadly and provide us with your feedback:

Expanding Our Reach Across the Country

The “DEI Field Program” was initiated to help bring equity into our Chapters' outreach efforts with the goal of broadening our patient base and providing more accessibility to our programming.

Inclusion & Belonging at Camp Oasis

 

Camp Oasis is the Foundation’s summer camp for children and young adults with IBD. Camp Oasis is offered both virtually and at multiple locations throughout the U.S. Our research shows that Camp Oasis has a lasting and positive impact on campers - helping  position them to better manage their IBD and live their best lives. We have implemented the initiatives below to foster an inclusive environment where all campers can feel a strong sense of belonging:

  • Cultural Competency Training for Volunteers: To help ensure all campers are met with a safe and supportive environment, the Foundation offers cultural competency training for all Camp Oasis volunteers and support staff. Topics include diversity, inclusion, microaggressions, unconscious bias, gender identity, and more.
  • Camp Scholarships: The National Camp Attendance Scholarship & Travel Stipend Program was created so no child would be turned away from camp for financial reasons. We’re proud to say that thanks to our generous donors, we have never turned down a request for assistance.
  • Supporting Gender Nonconforming Campers: Support plans are developed in collaboration with all campers who identify as gender nonconforming and their parents to ensure their needs are understood prior to camp.
  • 2024 Open House: This year we are hosting a Parent Open House to help build trust and engagement when cultural barriers may exist. Prospective parents can connect with experienced camp families, volunteers, and staff, and ask questions about the camp environment.
Sign up and learn more!

 

 

Takes Steps Accessibility

 

Take Steps is the Foundation's largest fundraising event and the most accessible way to get involved with the Foundation. Come join a walk near you!

 

 

Research & Care

Enhancing Black/African American IBD Care

Foundation’s grant team leaders and their local community advisory committee meet in Birmingham to discuss ongoing grant efforts.

In collaboration with the University of Alabama at Birmingham (UAB), we are working on a five-year project aimed at identifying and addressing barriers to medical diagnosis and care of the Black/African American Community in Birmingham, AL.


In 2024, a Multidisciplinary Advisory Committee was formed to guide and advance the work in Birmingham. The committee is comprised of 10 members which includes patients, caregivers, community leaders and healthcare professionals. The committee meets on a regular basis and assists in guiding and supporting awareness and educational efforts in the Birmingham area. For more information about the work taking place in Birmingham, click here.

 

Thank you to the Center for Disease Control and Prevention for providing the grant that is supporting this work.

Accelerating Enrollment in IBD Clinical Trials

Accelerating clinical trialsThe Foundation is underway with a three-year initiative that aims to improve the recruitment and retention of patients in IBD clinical trials. This includes exploring and addressing barriers to enrollment of diverse populations, initially focusing on Black/African American and Hispanic/Latino patients and developing best practices to enhance engagement through inclusion. We're thankful for the generous grant from The Leona M. and Harry B. Helmsley Charitable Trust that is funding this work.

 

 

If you are interested in contributing or partnering with us on our DEI efforts, please contact our Senior Director of Diversity, Equity and Inclusion, Sarah Lewis or Associate VP, Education & Diversity Engagement Caneka McNeil Moore.

Sarah Lewis, Senior Director, Diversity, Equity & Inclusion

Caneka McNeil Moore, Ed.D., Associate VP of Education & Diversity Engagement

 

 

 

 

 

 

The Community Engagement initiative is generously supported, in part, by the following partners:

Genentech logo
Takeda