The SBS community is integral to what the gutsy perspective aims to do. Not only is our project team made up of SBS community members, but we also commit to providing many avenues for others in the community to participate and shape the project. We see our engagement with the community as an ongoing conversation; results from community engagement opportunities will be featured on this page and accessible to all.
SBS/IF mini community survey results
Having completed our exploratory quality of life study, which was only available to the members of our stakeholder committee (see some of those study results here), we wanted to ensure that the broader SBS/IF community has the opportunity to share what matters to them in terms of quality of life. Amazingly, we received a total of 128 responses in just a few weeks! The infographic below provides an overview of who completed our survey. Detailed results of the community survey can be found here.
Rare Disease Day campaign
We are so excited to share this video in recognition of the short bowel syndrome community on Rare Disease Day. Thank you to all of those who sent us their pictures!
These photos speak to the multidimensional nature of the SBS experience- they speak to challenges and struggles but also to strength, resilience, and gratitude.
We are committed to continuing to shed light on the SBS experience and bringing the SBS community together through community-driven research.
On this day, and all other days, let's remember we are powerful when we come together.
Virtual focus groups
We are currently in the process of securing ethical approval to conduct focus groups with children and adolescents with SBS. We aim to hold focus groups in the spring of 2022.