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 “Vascular anomalies communication” (VACOM). Vascular anomalies are a group of…

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Prime Lending logo with buffalo

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! The event was an overwhelming success raising over $12,000 in…

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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 grant for her project titled “Non-canonical signaling and therapeutic targets for vascular…

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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 is characterized by atypical overgrowths and anomalies in blood…

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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 worry! You can RIDE, WALK or WHEEL your way, in…

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