The Cayenne Wellness Center will host its 17th Annual Sickle Cell Disease Educational Summit from September 17–20, 2025, as a hybrid event in San Jose, California, and online. This four-day gathering aims to advance education, advocacy, and awareness for sickle cell disease and trait, with a theme of "Let's Talk About Pain: The Seen and Unseen." The summit is expected to draw over 100 virtual attendees and 200 in-person participants, including healthcare professionals, educators, social workers, students, individuals with sickle cell disease, families, and the broader community.
A key highlight is the "Doctor to Doctor: What It's Like to Live With and Treat Sickle Cell" session on September 19, 2025, from 6:00 PM to 8:30 PM PST at Scott's in Oakland. This groundbreaking physician track event brings together nine doctors living with sickle cell disease to share their lived and clinical perspectives, challenging the healthcare community to rethink approaches to pain, trust, and treatment. Such initiatives are vital for improving patient-doctor relationships and care standards in a field where pain is often misunderstood or inadequately addressed.
The summit's agenda includes FDA-approved therapies, emerging treatments, curative options, advocacy, ER experiences, incarcerated care, nurse training, sickle cell trait education, and newborn screening. Specialized tracks for nurses, patients, and psychosocial considerations will provide tailored learning opportunities. Attendees can register and book accommodations at https://cayennewellness.org/scd-educational-summit-2025.
Additional features include a "Tribute to Our Golden Warriors" celebrating individuals aged 70 and older living with sickle cell disease, an awards and benefit concert headlined by R&B vocalist Dee Dee Simon, the SCAR Stories Exhibit showcasing the strength of sickle cell warriors through visual storytelling, and a private screening of the documentary "You Look Fine" by J Snow, which reveals hidden struggles of the disease. These elements emphasize the importance of holistic support and community engagement in managing sickle cell disease, which affects millions globally and disproportionately impacts Black and minority populations.
The summit underscores the ongoing need for improved education and advocacy in sickle cell care, addressing disparities in healthcare access and treatment. By fostering dialogue between patients, providers, and advocates, the event aims to drive policy changes, enhance clinical practices, and reduce stigma, ultimately improving quality of life for those affected by this genetic disorder.
