CLOVES Syndrome Community is proud to be launching the PIK3CA Related Conditions Collaborative Research Network, a patient and caregiver led research network that encourages the sharing of ideas among patients, scientists, and physicians. CLOVES Syndrome Community is one of thirty organizations chosen to participate in the Rare As One Network, which will provide CSC with capacity building tools, resources, funding, training and support, to strengthen our expanding patient community and scientific goals.
CLOVES Syndrome Community is working to create a patient-led collaborative research network in order to broaden the medical knowledge base, accelerate treatment options and improve quality of life for people with CLOVES and PIK3CA Related Conditions.
A patient led collaborative research network pulls together a community of stakeholders – including people with specific diseases, their family members, researchers and physicians – to discover and prioritize critical research questions. The research network relies on the collective voice to identify the most pressing questions and knowledge gaps about a disease. It then recruits the most qualified researchers to help answer these questions and to conduct these studies. We believe in the power of the collective. We believe that together, we can make a change in the lives of people with CLOVES and PIK3CA Related Conditions.
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