The Sickle Cell Community Consortium (SC3), in collaboration with Cleverly Changing, LLC, The B Strong Group, and Discovering Moorer2Life, will host the Fifth Annual Sickle Cell Caregiver Summit virtually from November 13–16, 2025. This year's theme, "The Heart of Caregiving: Balancing Mental Wellness, Advocacy, and Legacy," highlights the critical intersection of emotional support and systemic advocacy for those caring for individuals with sickle cell disease.
The summit's importance lies in addressing the often-overlooked mental health challenges faced by caregivers while providing practical tools for advocacy and legacy building. Caregivers of individuals with sickle cell disease face unique stressors, including managing chronic pain episodes, navigating complex healthcare systems, and advocating for proper treatment in medical settings. The event creates a crucial support network for these individuals, who frequently experience burnout and emotional exhaustion without adequate resources.
Supported by Title Sponsor Vertex Pharmaceuticals and Platinum Plus Sponsor Pfizer Pharmaceuticals, the summit has grown into one of the largest caregiver-led conferences in the sickle cell community. This corporate support enables the event to remain accessible while amplifying caregiver voices in national healthcare discussions. The partnership demonstrates increasing recognition of caregivers' essential role in patient outcomes and the broader healthcare ecosystem.
Mental Health & Wellness Sessions form a core component of the programming, offering daily workshops that provide practical tools for emotional resilience and spiritual renewal. These sessions address the psychological toll of caregiving, which can include anxiety, depression, and compassion fatigue. Family-Centered Programming includes tailored discussions for parents, siblings, spouses, and extended family members, recognizing that caregiving responsibilities often extend across multiple generations and relationships.
Entertainment & Exclusive Screening components, including interactive games and a sneak peek at an upcoming sickle cell docuseries by filmmaker Janks Morton, provide both relief and education through accessible formats. The inclusion of entertainment acknowledges the need for joy and connection alongside practical education.
Registration for the virtual event is available at https://scdcaregivers.org, making the summit accessible to caregivers worldwide regardless of geographic location or financial resources. The virtual format eliminates travel barriers that might otherwise prevent participation from caregivers who cannot leave their loved ones for extended periods.
For over a decade, the Sickle Cell Community Consortium has bridged the gap between research and real-life patient experiences. The caregiver summit continues this mission by connecting communities, advancing advocacy, and promoting mental wellness within families who live with sickle cell disease daily. The event's focus on legacy building ensures that caregivers' experiences and wisdom are preserved and shared to benefit future generations facing similar challenges.
The summit's emphasis on caregiver mental health comes at a critical time when healthcare systems increasingly recognize the importance of supporting those who provide unpaid care to chronically ill individuals. By addressing both immediate practical needs and long-term emotional resilience, the event contributes to sustainable caregiving practices that benefit both caregivers and patients. The collaboration between multiple organizations demonstrates the power of collective action in addressing complex health challenges that extend beyond medical treatment to encompass holistic family support.
