News

First publication from the VACOM Research Study

First publication from the VACOM Research Study

adminJul 21, 20221 min read

Since 2021, CLOVES Syndrome Community has supported the work of Dr. Bryan Sisk, Assistant Professor of Pediatric Hematology and Oncology at Bioethics Research Center with conducting a research study titled…

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Thank you to PrimeLending

Thank you to PrimeLending

adminJun 29, 20221 min read

Smashing into Spring! Thank you to our friends at PrimeLending, who chose CLOVES Syndrome Community as the beneficiary for their 1st Annual Smash Event at the Riot Room in Rochester!…

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Our 2022 Research Grant Recipient is Dr. Wen Yi Aw

Our 2022 Research Grant Recipient is Dr. Wen Yi Aw

adminJun 8, 20222 min read

The Scientific and Medical Advisory Board and Board of Directors of CLOVES Syndrome Community are pleased to award Dr. Wen Yih Aw of The University of North Carolina/Chapel Hill a $50,000…

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Exciting news for the CLOVES/PROS community: FDA approves Novartis Vijoice (alpelisib) as first and only treatment for select patients with PIK3CA-Related Overgrowth Spectrum (PROS)

Exciting news for the CLOVES/PROS community: FDA approves Novartis Vijoice (alpelisib) as first and only treatment for select patients with PIK3CA-Related Overgrowth Spectrum (PROS)

adminMay 27, 20221 min read

Vijoice is first approved treatment to specifically address the root cause of PROS conditions in select patients 2 years of age and older1.PROS is a spectrum of rare conditions and…

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Ride, wheel or walk your way with us on June 11, 2022

Ride, wheel or walk your way with us on June 11, 2022

adminMay 19, 20221 min read

We are excited to announce that we are once again participating in the Million Dollar Bike Ride fundraiser on June 11th in Philadelphia. Not able to travel to Philly? Don’t…

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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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