News

Why We Decided to Partner With a Research Platform

Why We Decided to Partner With a Research Platform

admin Jan 18, 2022 2 min read

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…

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New partnership with Odylia Therapeutics

New partnership with Odylia Therapeutics

Kristen Davis Oct 22, 2021 1 min read

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…

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Our 2nd 2021 Research Recipient

Our 2nd 2021 Research Recipient

admin Sep 7, 2021 2 min read

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”…

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Our 2021 Research Grant Recipient

Our 2021 Research Grant Recipient

Kristen Davis May 28, 2021 2 min read

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…

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Vascular Anomalies Communication (VACOM) Research Study

Vascular Anomalies Communication (VACOM) Research Study

Kristen Davis May 28, 2021 2 min read

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…

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