CLOVES Syndrome Community is a non-profit organization based in Kennebunk, ME, dedicated to improving the lives of individuals affected by CLOVES syndrome. They provide support, education, and empowerment to patients and their families, while also funding medical research and assisting with long-term medical costs. Through their patient-led research network, they strive to accelerate research and find treatment options for CLOVES and related conditions.
As part of the Rare As One Network, CLOVES Syndrome Community is committed to driving progress in the fight against rare diseases. They organize medical and family conferences, publish books for children, and bring families together for Betsy's Camp, an annual opportunity for community, fun, and relaxation. With their vision of an improved quality of life for those living with CLOVES syndrome, CLOVES Syndrome Community is making a significant impact in the rare disease community.
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