Experience

EveryLife Foundation for Rare Diseases

• United States
• Public Policy Offices
• 1 - 100 Employee

• RDLA State Advocacy Fellow

  • May 2020 - Present



Swapna Kakani

• Professional Speaker, Healthcare Advocate

  • Mar 2016 - Present

  Having faced numerous health challenges throughout my life, despite the gravity of each obstacle, I have had to persevere and learn to live with a chronic illness while still staying focused on my personal goals. I am a sought-after professional speaker in the area of overcoming personal adversity and an advocate in the area of healthcare delivery and the patient experience. Through my talks, I show audiences the power of individual resilience and self-determination in the face of constant difficulties, as well as the impact of healthcare advocacy across disciplines. I challenge audiences to rise above life’s adversities, live life to the fullest, and achieve their greatest goals despite the circumstances. Through my platform, Swapna Speaks, I have given several presentations across the world to various healthcare companies and associations, hospitals, and non-profit events, including the AVA and NHIA conferences, Stanford Medicine X e-patient, the Cleveland Clinic/HIMSS Patient Experience Summit, and a TEDx talk in 2017. I do healthcare advocacy work both at the federal and state level for the Short Bowel Syndrome/Intestinal Failure and broader rare disease community. I have been part of various projects to improve care and maintenance for IV and enteral nutrition consumers and part of policy and regulation changes to improve the rare disease patient experience. Please see all my speaking engagements at swapnakakani.com/events



Alabama Rare

• Founder & Director

  • Jan 2017 - Present

  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. The mission is to celebrate the rare disease stakeholders we do have in the state and collaborate to move forward and form new initiatives. Some initiatives we have done: • Hosted Alabama Rare Disease Day awareness event at the statehouse for 3 years with legislators, governor, clinicians, researchers, and patients/caregivers • Lead first ever annual Alabama Rare Disease Patient/Caregiver Symposium in 2017• Coordinated efforts to create an Alabama Rare Disease Advisory Council (HJR115) - Signed into Law April 3, 2017. Council started meeting quarterly August 2018. • Lead efforts to pass Resolution (HJR 149) recognizing February 28 as Rare Disease Day and February as Rare Disease Awareness Month in Alabama for the rest of time - Signed into Law February 28, 2018 Learn more at www.alabamarare.org



Alabama Department of Public Health

• United States
• Government Administration
• 700 & Above Employee

• TeleHealth Intern

  • May 2019 - Jul 2019

  I helped with the operations of the ADPH telehealth program. The small team managed 66 telehealth carts across the state at each county health department and the scheduling of telehealth appointments between patients, specialists, and county health department staff. I trained staff in County Health Departments (CHDs) on how to use the Telehealth cart and I envisioned, planned, and produced a training video on how to use the Telehealth cart in an effective way for a variety of adult learners for the staff of 65 county health departments in Alabama, ultimately, getting to present the program to Senator Jones and his district staff.



National Organization for Rare Disorders

• United States
• Non-profit Organizations
• 100 - 200 Employee

• Health Policy Intern

  • Jun 2017 - Dec 2017

  I Did research for state and federal policies pertinent to the rare disease population; such as Right to Try, Telemedicine, Medical Nutriton Equity Act of 2017, and the American Healthcare Act. I Lobbied on Capitol Hill for specific federal policy, helped with the organization's annual state report cards, and organized the on-boarding process for RAN state ambassadors



Huntsville Hospital

• United States
• Hospitals and Health Care
• 700 & Above Employee

• Quality Management Intern

  • Aug 2016 - Oct 2016



Alabama Pain Center

• Student Research Assistant

  • Jan 2013 - Jan 2014

  The Alabama Pain Center is a multidisciplinary, midsize, private treatment center for both chronic cancer pain and chronic non-cancer pain. For my undergraduate thesis I collected clinical data from chronic pain patients' electronic medical records to assess the affect of social support and coping skills on a patient's treatment progress. I specifically examined their level of adherence to both drug and cognitive behavioral therapy.