Caregivers of individuals with sickle cell disease often shoulder the burden of managing medical appointments, navigating complex healthcare systems, and providing emotional support while neglecting their own well-being. The 6th Annual Sickle Cell Caregiver Summit, a three-day virtual gathering from November 13–15, 2026, seeks to change that by putting caregivers front and center. Co-hosted by Cleverly Changing, LLC; The B Strong Group, Inc.; and Discovering Moorer2Life, the summit will bring together caregivers, individuals living with sickle cell disease, healthcare professionals, community leaders, and advocates from around the world.
With support from leading sponsors Vertex Pharmaceuticals Inc., Agios Pharmaceuticals, Inc., Pfizer Inc., and other community sponsors, the summit continues its mission to elevate caregiver voices, strengthen family support systems, and expand access to meaningful education and resources. Now in its sixth year, the caregiver-led event creates opportunities for families to learn from medical professionals, connect with other caregivers, share lived experiences, and explore practical approaches to navigating the challenges of sickle cell disease.
“Caregivers are often the people holding everything together, yet their own needs can go unnoticed,” said Carley Cole-Cavins, founder of Cleverly Changing, LLC and co-founder of the Sickle Cell Caregiver Summit. “We created this summit five years ago because caregivers deserve more than recognition. They deserve education, resources, meaningful connections, and a community that understands their experiences. Our goal is to ensure that no caregiver feels they have to navigate this journey alone.”
Sickle cell disease is an inherited blood disorder that can cause severe pain, anemia, organ damage, and other serious health complications. Beyond the medical challenges, families often face emotional, financial, educational, and social barriers that can significantly affect their quality of life. The 2026 summit addresses these realities through conversations focused on caregiver wellness, international experiences, storytelling, crisis response, and community advocacy. Sessions include “Caregiving Without Borders,” an international conversation featuring perspectives from Kenya, Ghana, Nigeria, and Germany; “When the Caregiver Needs Care,” a discussion about caregiver well-being and emotional health; “Caring Through Crisis,” which explores navigating difficult caregiving moments; and “Caregiver Stories That Heal,” highlighting the power of personal storytelling. A Young Storytellers Workshop for children ages 4–13 and a Youth Workshop on art catharsis and the history of sickle cell are also planned, along with “Allies in Action,” which focuses on how community organizations and faith-based groups can strengthen family support systems.
Because caregiving challenges extend across countries and cultures, the summit’s virtual format allows families and advocates to participate regardless of geographic location. Registration is free for international attendees, helping remove financial barriers to participation. Scholarship opportunities are also available for individuals who need registration assistance. General registration is available at https://www.scdcaregivers.org/register, and international attendees can register for free at https://tinyurl.com/37b782zb.
“Caregiving does not stop at geographic borders, and neither should access to education and support,” Cole added. “When caregivers share their stories and learn from one another, they help build stronger families and more informed communities.”
The summit also reflects the collective efforts of its hosting organizations. Cleverly Changing, LLC, founded in 2010 by award-winning author, speaker, and caregiver advocate Elle Cole (Carley Cole-Cavins), is a family education and health literacy platform dedicated to helping families become more informed, empowered, and confident advocates. More information is available at https://cleverlychanging.com. The B Strong Group is a 501(c)(3) nonprofit organization dedicated to empowering families impacted by sickle cell disease through education, advocacy, and community engagement, with details at https://thebstronggroup.org. Discovering Moorer2Life, founded by Andre and Cynthia Moorer in honor of their son, Andre Jr., is a nonprofit committed to health equity, education, advocacy, and support for families affected by sickle cell disease and other chronic and rare health conditions, with information at https://www.discoveringmoorer2life.org.
The summit matters because it addresses the often-overlooked needs of caregivers while fostering global collaboration and advocacy. By providing free access to education, resources, and community, it aims to strengthen families and improve the quality of life for those affected by sickle cell disease, a condition that disproportionately impacts communities worldwide.
