Caregivers who manage medical appointments, navigate healthcare systems, and provide emotional support for loved ones with sickle cell disease will take center stage at the 6th Annual Sickle Cell Caregiver Summit, a three-day virtual gathering scheduled for November 13-15, 2026. Co-hosted by Cleverly Changing, LLC, The B Strong Group, Inc., and Discovering Moorer2Life, the event will convene caregivers, individuals living with sickle cell disease, healthcare professionals, community leaders, and advocates from around the world.
The summit matters because 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 sessions focused on caregiver wellness, international experiences, storytelling, crisis response, and community advocacy.
With support from sponsors including Vertex Pharmaceuticals Inc., Agios Pharmaceuticals, Inc., Pfizer Inc., and other community sponsors, the caregiver-led event continues its mission to elevate caregiver voices, strengthen family support systems, and expand access to meaningful education and resources. Now in its sixth year, it 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."
The program includes "Caregiving Without Borders," an international conversation featuring perspectives from Kenya, Ghana, Nigeria, and Germany that explores shared challenges and different healthcare systems. Other sessions include "When the Caregiver Needs Care," focused on caregiver well-being and emotional health; "Caring Through Crisis," on navigating difficult caregiving moments and building support networks; "Caregiver Stories That Heal," on the power of personal storytelling; a Young Storytellers Workshop for children ages 4-13; a Youth Workshop on art catharsis and ekphrastic pain management; and "Allies in Action," highlighting how community organizations, faith-based groups, and advocates can strengthen family support systems.
Because caregiving challenges extend across countries and cultures, the virtual format allows families and advocates to participate regardless of geographic location. Registration is free for international attendees, helping remove financial barriers to participation, and scholarship opportunities are available for individuals who need registration assistance. General registration is available at https://www.scdcaregivers.org/register, while international attendees can register 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 hosting organizations bring distinct missions to the effort. Cleverly Changing, LLC, founded in 2010 by caregiver advocate Elle Cole, is a family education and health literacy platform, and more information is available at https://cleverlychanging.com. The B Strong Group is a 501(c)(3) nonprofit dedicated to empowering families impacted by sickle cell disease through education, advocacy, and community engagement. Discovering Moorer2Life, founded by Andre and Cynthia Moorer in honor of their son, Andre Jr., is committed to health equity, education, advocacy, and support for families affected by sickle cell disease and other chronic and rare health conditions.
For readers, the summit signals a growing recognition that caregiver well-being is central to managing sickle cell disease, and that free international access could broaden the exchange of resources and experiences across healthcare systems. The 2026 gathering also reflects the collective efforts of its hosting organizations, speakers, volunteers, and community partners.
