The 6th Annual Sickle Cell Caregiver Summit will convene caregivers, individuals living with sickle cell disease, healthcare professionals, and advocates from around the world for a three-day virtual gathering from November 13–15, 2026. Co-hosted by Cleverly Changing, LLC; The B Strong Group, Inc.; and Discovering Moorer2Life, the summit is designed to elevate caregiver voices, strengthen family support systems, and expand access to meaningful education and resources. With support from sponsors including Vertex Pharmaceuticals Inc., Agios Pharmaceuticals, Inc., and Pfizer Inc., the event continues its mission of prioritizing the lived experiences of families affected by sickle cell disease.
Sickle cell disease is an inherited blood disorder that can cause severe pain, anemia, organ damage, and other serious health complications. Beyond medical challenges, families often face emotional, financial, educational, and social barriers that can significantly affect their quality of life. The summit addresses these realities through sessions focused on caregiver wellness, international experiences, storytelling, crisis response, and community advocacy. Among the featured conversations are "Caregiving Without Borders," which explores 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 offers practical approaches to navigating difficult caregiving moments; and "Caregiver Stories That Heal," highlighting the power of personal storytelling and community connection. 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 sessions for allies in action.
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 and encouraging a broader exchange of ideas, resources, and experiences. Scholarship opportunities are also available for individuals who need registration assistance. General registration is available at https://www.scdcaregivers.org/register, while international attendees can register for free at https://tinyurl.com/37b782zb.
"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." Cole also emphasized that caregiving does not stop at geographic borders, and neither should access to education and support.
The summit's hosting organizations bring distinct strengths to the effort. Cleverly Changing, LLC, founded in 2010 by award-winning author, speaker, and caregiver advocate Elle Cole, 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, Inc. is a 501(c)(3) nonprofit organization dedicated to empowering families impacted by sickle cell disease through education, advocacy, and community engagement, founded in honor of a young warrior named Braden. Details can be found 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. Its website is https://www.discoveringmoorer2life.org.
The summit matters because it directly addresses the often-overlooked needs of caregivers while fostering international collaboration and practical education. By offering free international registration and scholarships, it lowers barriers to participation and helps build stronger, more informed families and communities. For the healthcare industry, the event underscores the importance of caregiver wellness and cross-border learning in managing sickle cell disease, while for the public it highlights the critical role caregivers play and the resources available to support them.
