Alabama Rare is a grassroots organization to unite Alabama around the rare disease population. It acts to bring support for individuals & families, educate the broader community, bring awareness to the population's needs, and advocate for necessary change to improve healthcare delivery.
Alabama Rare was founded in 2017 by Swapna Kakani, a young adult born and raised in Huntsville, AL. Swapna was born with a rare congenital defect of the Small Intestine that led to the diagnosis of the rare disease, Short Bowel Syndrome.
About Swapna Kakani
Swapna Kakani is a professional keynote speaker and advocate in the area of healthcare delivery and the patient experience. Swapna was born with Short Bowel Syndrome, has required IV nutrition through a central venous catheter for 29 years and counting & nutrition through a feeding tube for 20 years, and has endured 65 surgeries including a small intestine transplant in 2014. Her story shows audiences her individual resilience and self-determination in the face of constant difficulties, as well as the impact of her healthcare advocacy across disciplines. Swapna through her platform, Swapna Speaks, has given several presentations across the U.S. through medical conferences, hospitals, medical schools/residencies, graduation ceremonies, and corporate events, including giving a TEDx talk, performing live for The Moth, and speaking for Fortune 500 companies and Pharmaceutical companies. Swapna, in addition, does healthcare advocacy work both at the federal and state level for the Short Bowel Syndrome/Intestinal Failure and broader rare disease community. She has been part of various projects, including ones to improve the care and maintenance of central venous access devices (CVAD) and part of regulation changes to improve the patient experience of IV nutrition consumers.
In 2017, Swapna worked in Washington D.C. for the National Organization for Rare Disorders (NORD) researching federal and state health policies and advocating on Capitol Hill to ultimately expand care for individuals with rare diseases. But, her desire to make an impact in her home state called her back to Alabama. Inspired by her own personal healthcare experiences and what she had learned of the rare disease community locally and nationally, Swapna created Alabama Rare.
Swapna, originally from Huntsville, AL, received her bachelor’s degree in Psychology from the University of Alabama at Birmingham (UAB) in 2013. She now lives in Birmingham and is currently back at UAB working on her Masters in Public Health.