FOR IMMEDIATE RELEASE Media Contact: Carley Cole-Cavins, Director, 410-429-7043 Download Assets: SCD Caregiver Summit Press Kit

Sickle Cell Community Consortium Announces The Inaugural Sickle Cell Caregiver Summit

Atlanta (October 29, 2021) – The Sickle Cell Community Consortium is excited to announce the Inaugural Sickle Cell Caregiver Summit in partnership with Cleverly Changing, LLC.

The Sickle Cell Caregiver Conference will be completely virtual. The Inaugural Sickle Cell Caregiver Summit is dedicated to educating, providing resources and a space for networking  among sickle cell caregivers globally.

The theme is Caregiving: Bridging Empathy, Knowledge, and Compassion. The Caregivers Summit was organized by sickle cell caregivers for caregivers. Caregivers know firsthand the necessities to keep going when caring for loved ones living with a chronic illness such as sickle cell disease. Elle Cole, mom of a 13-year-old sickle cell patient, says, “Having a sickle cell caregiver conference is vital during the pandemic as many of us feel isolated because our loved ones have compromised immune systems. By getting together virtually, we recognize that we are not alone in our joys and challenges. This is an opportunity for us to encourage each other and share our experiences.” 

The title sponsor is Vertex Pharmaceuticals.Additional sponsors include: BlueBird Bio, Agios, Forma, Novartis, Sanofi Genzyme, Pfizer, Fulcrum, and more. Educational sessions are geared towards caregivers who are parents, grandparents, siblings, guardians, friends, and care workers of individuals living with sickle cell disease. Activities will include Paint & Chat, trivia games, networking opportunities, and more. 

The “Sickle Cell Caregiver Summit” will be held November 12th through November 14th, 2021, with early check-in and a welcome ceremony on Friday, November 12th. Sessions begin daily at 7am PST/10am EST and will include social engagement presented by the summit’s sponsors. The conference is open to the public. For more information, visit

The Sickle Cell Community Consortium is a 501(c)(3) non-profit formed in 2014 to “harness and amplify the power of the patient voice.” The Consortium includes sickle cell community-based organizations (CBOs), patient and caregiver advocates, community partners, and medical and research advisers. Donations to the Sickle Cell Community Consortium help define problems and gaps in the sickle cell community, identify strategies to address those needs and gaps, and determine the CBO, Community, and Corporate partnerships best equipped to implement those strategies to achieve significant and sustainable change. To learn more, visit Follow The Sickle Cell Community Consortium at, Instagram at, and Twitter at (@SCCConsortium).

Cleverly Changing, LLC is a media company established by Carley Cole-Cavins. The company  empowers moms, homeschoolers, and advocates for children with special needs such as Sickle Cell Disease and Type 1 Diabetes. The company publishes literature for children living with sickle cell disease, a homeschool podcast called the Cleverly Changing Podcast, and creates online content for health literacy and wellness. Follow Cleverly Changing at, Instagram at, and Twitter at (@CleverlyChangin).

Download assets at SCD Caregiver Summit Press Kit


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