Community voices

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. 

Launching virtual focus groups for kids and teens with SBS!

Kids' voices matter. That's why we are so thrilled to announce the launch of our newest project: focus groups with kids and teens with SBS! The conversations in these groups will help us better understand how kids and teens experience life with SBS, and will ultimately shape our quality of life survey. For kids, the focus groups are an opportunity to meet other kids their age with SBS. Focus groups will be held on the first two weekends in August 2022.  

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.

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.

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