Swapna Kakani, patient advocate.

The Health Design Podcast

Swapna Kakani is a nationally known 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 leaders to make a difference within themselves and in their organizations to create and sustain valuable patient-and family-centered care across the care journey. 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/Intestinal Failure and broader rare disease communities in her home state of Alabama and nationally. In 2017, she founded Alabama Rare, a grassroots coalition to unite the state around the rare disease population, which has passed state bills and started educational initiatives for families affected by rare disease in the state. In 2021, she co-founded the gutsy perspective, a research initiative driven by members of the short bowel syndrome (SBS) community to investigate quality of life, and priorities, of patients with SBS and their families. The initiative published their first journal article in 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). You can find Swapna on Facebook, Instagram, or Twitter @SwapnaSpeaks or on Linkedin at www.linkedin.com/in/Swapna Kakani www.swapnakakani.com Alabama Rare – www.alabamarare.org the gutsy perspective – www.thegutsyperspective.org