Swapna Kakani, MPH is an award-winning advocate, speaker, consultant, and researcher in rare and chronic disease health care delivery and patient experience. Swapna was born with Short Bowel Syndrome (SBS), a rare GI disease, and received a small intestine transplant 10 years ago. Through her platform, Swapna Speaks, Swapna has spoken across the world to several hospitals, health care companies and associations, and has given a TEDx talk. Swapna also does health care advocacy, research, and policy work for the short bowel syndrome, intestinal failure, vascular access, and broader rare disease communities in her home state of Alabama and nationally. In 2017, she founded Alabama Rare, an organization advancing healthcare policy and education for Alabama’s rare disease community. In 2024, they passed the first community-driven newborn screening RUSP parity legislation. In 2021, she, alongside parent researchers/advocates, co-founded the gutsy perspective, a research initiative driven by members of the short bowel syndrome (SBS) community to ensure the patient and family narrative is represented in research and patient centered outcomes. The gutsy perspective has developed the first ever community-driven disease specific quality of life tool to investigate the well-being of children and their families affected by SBS and published findings from pilot data in multiple journals.