News

Covid-19

Covid-19

adminDecember 22, 20202 min read

Surveillance Epidemiology of Coronavirus (COVID-19) Under Research Exclusion for Vascular Anomalies. Researchers need information on COVID-19 and vascular anomalies. If you have a vascular anomaly and contract COVID-19, please ask your…

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News from the lab – December 2020

News from the lab – December 2020

adminDecember 22, 20205 min read

Dear GoPI3Ks/CLOVES community,  When Mandy Sellars approached me about a contribution to this year’s GoPI3Ks newsletter, I could not help asking myself the same old question: “Is this year ALREADY…

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Introducing the International PIK3CA Related Conditions Patient Registry

Introducing the International PIK3CA Related Conditions Patient Registry

adminDecember 15, 20202 min read

Make a difference for all affected with PIK3CA related conditions by participating in our multi-lingual patient registry A patient registry is an online system set up to collect, store, retrieve,…

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Spreading awareness for CLOVES Awareness Day

Spreading awareness for CLOVES Awareness Day

adminJuly 28, 20201 min read

For this year’s CLOVES Awareness Day on August 3rd, we wanted to share the voices of our community.  We asked our community to share challenges, worries and what matters most…

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CLOVES Syndrome Community Receives $450,000 Award from Chan Zuckerberg Initiative

CLOVES Syndrome Community Receives $450,000 Award from Chan Zuckerberg Initiative

adminFebruary 3, 20204 min read

CLOVES Syndrome Community Receives $450,000 Award from Chan Zuckerberg Initiative Transformative grant will empower a patient community to accelerate collaborative research against CLOVES Syndrome, a rare genetic disorder KENNEBUNK, ME –…

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