Celebrating Diversity Within the Sickle Cell Community: Commitment, Innovation, Practice
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Carla Lewis

Atrium Health: Levine Childrens Institute
Executive Director
Carla Lewis is a dedicated advocate for those living with sickle cell disease. Carla’s advocacy journey began in April 2002 when she gave birth to her son diagnosed with sickle cell beta – thalassemia. In 2004 Carla started the first Sickle Cell Support group at or Arnold Palmer Hospital in Orlando, FL. Today she is the CEO & founder of Kids Conquering Sickle Cell Disease Foundation based in Orlando, Florida. Carla is also the Co- Founder of the Young Adult Sickle Cell Alliance established in 2016. Carla Lewis graduated with a Bachelors Degree in Psychology from York College in Queens, New York. She also completed a Nonprofit Management Certification Program at the University of Central Florida.  Carla earned her certification as a Hemoglobinopathy Counselor in 2016. She is currently seeking to earn her Master’s Degree in Public Health Administration. Carla is also a trained National Sickle Cell Research Advocate Facilitator who had the pleasure of completing the training program for National Sickle Cell Advocate Network (NSCAN) developed by National Sickle Cell Association of America (SCDAA).

In an effort to impact interest and funding research for rare diseases, Carla advocates with Rare Disease Legislative Advocacy (RDLA) and National Organization for Rare Disorders (NORD) to educate and promote legislation that encourages more effective, efficient and up-to-date healthcare policies.

In Carla’s spare time, she enjoys traveling with her family, spending time quality with friends and staying active at her home church, Majestic Life. Carla also enjoys educating the community & offering hope sharing her engaging, gripping, hopeful story about being an advocate and suggestions for health improvement.

My Speakers Sessions

Friday, October 12

3:15pm EDT