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,…
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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…
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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…
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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…
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New partnership with Odylia Therapeutics
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 clinical progress towards treatments for people with this syndrome. Odylia’s…
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