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. It aims to celebrate what we have in our backyard, and collaborate with stakeholders to move rare disease diagnostics, policy, delivery of care, and patient experience forward.
In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. This definition was created by Congress in the Orphan Drug Act of 1983. There are over 7,000 rare diseases. 1 in 10 have a rare disease. Which means the total number of Americans living with a rare disease is estimated to be ~30 million and in Alabama ~500,000. 95% of rare diseases do not have an FDA approved therapy.
In the European Union, a disease is defined as rare when it affects fewer than 1 in 2,000 people.
Alabama Rare Leadership
Swapna Kakani
Founder & Chief Executive Officer
Swapna currently resides in Huntsville, AL where she was born and raised. She is a professional keynote speaker and advocate in the area of rare disease healthcare delivery and the patient experience. Swapna was born with Short Bowel Syndrome, has required IV nutrition through a central venous catheter for 30 years and counting & nutrition through a feeding tube for 20 years, and has endured 65 surgeries including a small intestine transplant in 2014. Swapna has given several presentations across the U.S. through medical conferences, hospitals, medical schools/residencies, graduation ceremonies, and corporate events, including a TEDx talk. 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 received her Master’s in Public Health in 2020 from UAB and previously worked as the EveryLife Foundation’s State Advocacy Fellow.
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 where she received all of her pediatric care. Inspired by her own personal healthcare experiences in Alabama and what she had learned of the rare disease community locally and nationally, Swapna created Alabama Rare.
Email Swapna at Swapna@alabamarare.org
Brooke Thomas
Chief Programs Officer
Brooke originates from deep in the heart of Texas, but has called the Alabama Gulf Coast home since 2017. She and her husband Mich have three children with MPS I, Hurler Syndrome, a rare disease caused by the lack of the enzyme alpha-L-iduronidase.
In her professional life, Brooke has worked in non-profit management and advocacy training organizations across the Southeast. As a parent advocate, Brooke's focus is building inclusive communities, healthcare equity, and supporting the needs of patients & caregivers.
Email Brooke at brooke@alabamarare.org.