Swapna Kakani is a sought-after speaker and an award-winning advocate in rare and chronic disease healthcare delivery and the patient experience. Her life story shows audiences her individual resilience and self-determination in the face of constant difficulties, as well as the impact her healthcare advocacy has across disciplines. Swapna was diagnosed with the rare disease Short Bowel Syndrome at birth and for her entire 33 years has lived with nutrition through an IV and/or a feeding tube. In 2014, she had a small intestine organ transplant. Swapna through her platform, Swapna Speaks, has spoken across the world to several healthcare companies and associations motivating their members to make a difference within themselves, their organizations, and in the healthcare system, to create and sustain valuable patient engagement at every point of access. Her recent presentations include the Cleveland Clinic Patient Experience Summit, the Healthcare Information and Management Systems Society (HIMSS) Conference, the Association for Vascular Access, and a TEDx talk.
Swapna also does healthcare advocacy and policy work for the Short Bowel Syndrome (SBS)/Intestinal Failure (IF) and broader rare disease communities in her home state of Alabama and nationally. In 2021, she co-founded the gutsy perspective, an SBS/IF community-driven research initiative committed to elevating the voices and multi-disciplinary experiences by investigating the impact of SBS/IF on patients and caregivers through grass-roots research with the community as active stakeholders. The gutsy perspective is developing the first-ever disease-specific quality-of-life tool to investigate the well-being of patients and their families affected by SBS since birth. The initiative published its first journal article in the Journal of Pediatric Surgery in October 2021.
Swapna, originally from Huntsville, AL, received her Bachelor's in Psychology and Master’s in Public Health from the University of Alabama at Birmingham (UAB).
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Thursday, February 9, 2023
8:30 AM – 9:45 AM