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…
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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…
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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…
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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”…
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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…
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