Year Three Funding for CLOVES Syndrome Community

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 transformational, awe-inspiring and humbling to be a part of. We are truly grateful! “In 2019, the Chan Zuckerberg Initiative launched the Rare As One Network,

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Year Two – VACOM Research Study

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 below for an update. They will also be hosting an update webinar through CLOVES Syndrome Community at 1pm EST on Saturday, March 12th. Register for

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Scientific Meeting Recap

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 patient led PIK3CA Related Conditions Research Network development with the Chan Zuckerberg Initiative Rare As One Network.  The meeting was a great success and we

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First publication from the VACOM Research Study

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 rare disorders that can be disfiguring, painful, and even life-threatening. However, no researchers have explored

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Thank you to PrimeLending

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 support of our mission. Want to learn more about DIY fundraising for CSC? Contact our

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Our 2022 Research Grant Recipient is Dr. Wen Yi Aw

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 anomalies in CLOVES.” Dr. Aw has provided a summary of her project for our community

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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)

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 vessels, the lymphatic system and other tissues. Approval based on real-world data from EPIK-P1 study,

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

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 your own city, town or neighborhood and raise funds for CSC! Simply register here through

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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 Life Mottos on our Facebook Page. A big thank you to Novartis Oncology for their

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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 easy it is: AllStripes did all of the work to pull together my daughter’s records,

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