6th Annual Sickle Cell Caregiver Summit Brings Global Voices Together to Strengthen Families, Advocacy, and Caregiver Wellness
November 13–15 Virtual Event Connects Caregivers, Healthcare Professionals, and Advocates Across Borders
COLUMBIA, SC, November 08, 2026 -- Caregivers are often the unsung heroes of the sickle cell community, managing medical appointments, navigating healthcare systems, advocating for loved ones, and providing emotional support while balancing their own well-being. This November, their experiences and expertise will take center stage during the 6th Annual Sickle Cell Caregiver Summit, a three-day virtual gathering taking place November 13–15, 2026.
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."
A Global Conversation About Caregiving
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.
Caregiving Without Borders: An international conversation featuring perspectives from Kenya, Ghana, Nigeria, and Germany, exploring shared challenges and different healthcare systems.
When the Caregiver Needs Care: A discussion about caregiver well-being, emotional health, and recognizing when those providing care also need support.
Caring Through Crisis: A conversation about navigating difficult caregiving moments, finding resources, and building support networks.
Caregiver Stories That Heal: Exploring the power of personal storytelling, shared experiences, and community connection.
Young Storytellers Workshop: An interactive creative experience for children ages 4–13, encouraging imagination, collaboration, and self-expression.
Youth Workshop: Art Catharsis - Ekphrastic Pain Management & The History of Sickle Cell Workshop
Allies in Action: Highlighting how community organizations, faith-based groups, advocates, and other allies can strengthen family support systems.
Among other sessions
Expanding Access Beyond Geographic Borders
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.
"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."
Corporate and Community Partnerships Strengthen the Mission
The 2026 Sickle Cell Caregiver Summit recognizes Vertex Pharmaceuticals Inc. and Agios Pharmaceuticals, Inc. for their sponsorship and support of this year's gathering. Their contributions help make it possible to convene caregivers, advocates, and professionals for conversations that prioritize the lived experiences of families affected by sickle cell disease. The summit also reflects the collective efforts of its hosting organizations, speakers, volunteers, and community partners.
Registration and Event Details
Event: 6th Annual Sickle Cell Caregiver Summit
Dates: November 13–15, 2026
Format: Virtual, accessible worldwide
Audience: Caregivers, people living with sickle cell disease, families, healthcare professionals, advocates, and community organizations
General Registration: https://www.scdcaregivers.org/register
International Registration (Free): https://tinyurl.com/37b782zb
Scholarship Inquiries: scdcaregivers@gmail.com
Media representatives interested in interviews with summit organizers, speakers, or participating caregivers are encouraged to contact the organizing team.
The Hosting Organizations
Cleverly Changing, LLC
Founded in 2010 by award-winning author, speaker, and caregiver advocate Elle Cole (Carley Cole-Cavins), Cleverly Changing, LLC is a family education and health literacy platform dedicated to helping families become more informed, empowered, and confident advocates. Through children's books, educational resources, podcasting, and digital storytelling, Cleverly Changing addresses sickle cell disease, Type 1 diabetes, caregiving, parenting, and family wellness. Website: https://cleverlychanging.com.
The B Strong Group, Inc.
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. Founded in honor of a young warrior named Braden, the organization encourages families to remain strong, informed, and connected. Website: https://thebstronggroup.org
Discovering Moorer2Life
Founded by Andre and Cynthia Moorer in honor of their son, Andre Jr., Discovering Moorer2Life is a nonprofit organization committed to health equity, education, advocacy, and support for families affected by sickle cell disease and other chronic and rare health conditions. Website: https://www.discoveringmoorer2life.org
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Contact Information
Carley Cole-CavinsCleverly Changing LLC
Laurel, Maryland
USA
Voice: 410-357-1052
Website: Visit Our Website
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