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...
View ArticleExciting news for the CLOVES/PROS community: FDA approves Novartis Vijoice...
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...
View ArticleOur 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...
View ArticleThank 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...
View ArticleFirst 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...
View ArticleWe’re proud to help fund the first Zebrafish models of CLOVES
We’re pleased to announce a $100,000 research donation to the University of Edinburgh – Patton Lab – to develop zebrafish models of CLOVES. Dr. Hannah Brunsdon has written a lay summary about this...
View ArticleChanges in leadership at CLOVES Syndrome Community
CLOVES SYNDROME COMMUNITY EXECUTIVE DIRECTOR KRISTEN DAVIS TO STEP DOWN NEXT YEAR KENNEBUNK, ME — (May 16, 2023) – The Board of Directors of CLOVES Syndrome Community today announced the planned...
View ArticleCLOVES Syndrome Community and NORD® Launch Natural History Study of CLOVES...
Research study is open to participants worldwide to advance understanding and treatments for rare disease causing CLOVES Syndrome. December 1, 2023 — Today, CLOVES Syndrome Community and the National...
View ArticleResearch News from the Lab
Written by: Ralitsa Madsen At the time of writing this newsletter for CLOVES Syndrome Community (CSC), I realise that 29 February is just around the corner (24h and 15 minutes to go!). This is a...
View ArticleCLOVES SYNDROME COMMUNITY NAMES LAUREN BEAUREGARD AS NEW EXECUTIVE DIRECTOR
The Board of Directors of CLOVES Syndrome Community today announced the appointment of Lauren Beauregard as its new executive director, succeeding Kristen Davis who has guided the organization since...
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