Year Three Funding for CLOVES Syndrome Community

CLOVES Syndrome Community applied for and was selected to receive an additional year of funding ($150,000) and resources with the Rare As One Network! This patient-led research network has been transformational, awe-inspiring and humbling to be a part of. We are truly grateful! “In 2019, the Chan Zuckerberg Initiative launched the Rare As One Network,

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Year Two – VACOM Research Study

We are pleased to support the second year of Dr. Bryan Sisk’s and Dr. Anna Kerr’s research study titled “Vascular Anomalies Communication” (VACOM) with a $9408 grant. See the details below for an update. They will also be hosting an update webinar through CLOVES Syndrome Community at 1pm EST on Saturday, March 12th. Register for

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Scientific Meeting Recap

October 28th-29th 2021 was the first International Scientific Meeting for PIK3CA Related Conditions which was hosted and sponsored by CLOVES Syndrome Community. We hosted this meeting as part of our patient led PIK3CA Related Conditions Research Network development with the Chan Zuckerberg Initiative Rare As One Network.  The meeting was a great success and we

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Rare Disease Day 2022 Recap!

Thank You to the 15 CLOVES families who shared their Life Mottos and stories with us. Their journeys have shown how real, strong, brave, worried, loved, and RAD we all can be. You can check out the entire series of Life Mottos on our Facebook Page. A big thank you to Novartis Oncology for their

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Why We Decided to Partner With a Research Platform

We first learned about AllStripes — a research platform designed specifically for rare disease — in the summer of 2019, when I was able to trial the platform and process on behalf of my daughter. My favorite part was how easy it is: AllStripes did all of the work to pull together my daughter’s records,

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New partnership with Odylia Therapeutics

CLOVES Syndrome Community is pleased to announce a new partnership with Odylia Therapeutics. Through this partnership, Odylia will provide scientific and strategic guidance regarding the current state of research and clinical progress towards treatments for people with this syndrome. Odylia’s work will enable CSC to deploy their resources to effectively seek out new and better

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Our 2nd 2021 Research Recipient

We are pleased to announce the second recipient of our 2021 Research Grant.  Dr. Robert Semple will receive a $25,000 grant for the project titled “Human Pluripotent Stem Cells as a Model to Interrogate Pathogenesis and Developmental Origins of CLOVES” This project will investigate human induced pluripotent stem cells (iPSCs) as a model system to

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Our 2021 Research Grant Recipient

We are pleased to announce the recipient of our 2021 Research Grant.  Ana Angulo-Urarte will receive a $25,000 grant for the project titled “Identifying the molecular impact of PIK3CA variants in PROS towards stratification of patients and personalized medicine.”  This research project will enhance the fundamental understanding of the physiological and molecular insight into PIK3CA-related overgrowth spectrum

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Vascular Anomalies Communication (VACOM) Research Study

We’re pleased to be supporting Dr. Bryan Sisk’s research study titled “Vascular anomalies communication” (VACOM) with a $10,000 grant.   Please read about this research study below.  We’ll share additional information with our community soon about how you can participate in this study. Vascular anomalies are a group of rare disorders that can be disfiguring, painful,

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Accelerating research with AllStripes

CLOVES Syndrome Community is excited to partner with the medical data science company AllStripes to create a research database that will power new PIK3CA-related overgrowth spectrum (PROS) research studies. To move this research forward, we’re looking for families/patients willing to contribute their medical records to make this effort as strong as possible. All data shared

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