The Third Annual Sickle Cell Caregiver Summit, hosted by the Sickle Cell Community Consortium (SCCC) and Cleverly Changing LLC, spanned four days from November 16th to 19th, 2023. This summit provided a comprehensive platform for caregivers, patients, researchers, and advocates to engage in crucial discussions, workshops, and networking opportunities focused on sickle cell disease.
Day 1: November 16th
The event commenced with a check-in and help desk for all attendees, followed by a powerful opening ceremony featuring influential figures such as Elle Cole, Scott McGoohan from Vertex, Sharonda Sikes, Dr. Lakiea Bailey (CEO of SCCC), and Lanita Smith.
Day 2: November 17th
The agenda included various sessions addressing critical aspects of sickle cell disease:
– The PROGRESS pre-conference session aimed to prioritize patient and caregiver-valued outcomes in sickle cell disease, led by prominent figures like Dr. Lakiea Bailey and Raymona Lawrence.
– Sessions covered diverse topics such as sickle cell organ and lung health, sickle cell trait education, stroke preventative care, male and female health concerns, and networking opportunities.
Day 3: November 18th
The day started with morning wellness activities and a keynote address by Sharl Azar from Massachusetts General Hospital’s Sickle Cell Disease Treatment Center, emphasizing comprehensive care strategies. Later sessions covered career choices, workplace rights for caregivers, advocacy beyond the sickle cell community, and engaging workshops tailored for the next generation.
Day 4: November 19th
The summit concluded with sessions focusing on lessons learned from caregivers, navigating the healthcare system, engaging lunch and learn sessions with Pfizer Pharmaceuticals, a “Ask A Doctor/Scientist” session, and culminated in a grand Caregiver Award Ceremony and Tributes honoring exceptional contributors to the sickle cell community.
Throughout the event, attendees had opportunities to participate in focused discussions, engage with experts in the field, explore innovative approaches to care and advocacy, and connect with a diverse community committed to improving the lives of those affected by sickle cell disease.
The summit stood as a testament to the collective dedication and collaborative efforts toward advancing knowledge, care, and support for individuals and families impacted by sickle cell disease.
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