Swapna Kakani: Rare Disease Survivor, Non Profit Founder, Pro Speaker | Yash & Company Podcast

"Rare is not rare" - Swapna Kakani


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. Also, in 2017, back in Alabama, Swapna noticing a disconnect in her home state in regard to rare disease care, and created Alabama Rare. It is a grassroots coalition to unite the state 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.

Swapna, originally from Huntsville, AL, received her bachelors in Psychology from the University of Alabama at Birmingham (UAB) in 2013 and is currently back at UAB working on her Masters in Public Health.

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Show Notes:

Ted Talk: How I Found My Purpose In My Disease Book Suggestions: Checklist Manifesto by Atul Gawande Others Suggestions: Toastmasters