News

Year Three Funding for CLOVES Syndrome Community

Year Three Funding for CLOVES Syndrome Community

Kristen DavisFeb 8, 20222 min read

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…

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Year Two – VACOM Research Study

Year Two – VACOM Research Study

Kristen DavisFeb 8, 20222 min read

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…

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Scientific Meeting Recap

Scientific Meeting Recap

Kristen DavisNov 15, 20217 min read

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…

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Rare Disease Day 2022 Recap!

Rare Disease Day 2022 Recap!

Kristen DavisMar 4, 20221 min read

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…

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Why We Decided to Partner With a Research Platform

Why We Decided to Partner With a Research Platform

adminJan 18, 20222 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…

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New partnership with Odylia Therapeutics

New partnership with Odylia Therapeutics

Kristen DavisOct 22, 20211 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…

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Our 2nd 2021 Research Recipient

Our 2nd 2021 Research Recipient

adminSep 7, 20212 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…

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Our 2021 Research Grant Recipient

Our 2021 Research Grant Recipient

Kristen DavisMay 28, 20212 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…

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Vascular Anomalies Communication (VACOM) Research Study

Vascular Anomalies Communication (VACOM) Research Study

Kristen DavisMay 28, 20212 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…

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Accelerating research with AllStripes

Accelerating research with AllStripes

Kristen DavisApr 9, 20212 min read

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…

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Covid-19

Covid-19

adminDec 22, 20202 min read

Surveillance Epidemiology of Coronavirus (COVID-19) Under Research Exclusion for Vascular Anomalies. Researchers need information on COVID-19 and vascular anomalies. If you have a vascular anomaly and contract COVID-19, please ask your…

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News from the lab – December 2020

News from the lab – December 2020

adminDec 22, 20205 min read

Dear GoPI3Ks/CLOVES community,  When Mandy Sellars approached me about a contribution to this year’s GoPI3Ks newsletter, I could not help asking myself the same old question: “Is this year ALREADY…

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