Covid-19

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 doctor to complete the brief questionnaire below. The SECURE-VA registry is a collaborative worldwide registry for healthcare providers to report COVID-19 in vascular anomaly patients. We

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News from the lab – December 2020

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 over?” As usual, this question triggered substantial reflections. It is hard to believe that it has been a bit over a year already since I

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Introducing the International PIK3CA Related Conditions Patient Registry

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, and analyze information on individuals diagnosed with a rare disease. By joining the PIK3CA Related Conditions International Patient Registry you can choose to safely and

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Spreading awareness for CLOVES Awareness Day

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 to them.   We believe that your opinion matters and that by amplifying the voices of people with CLOVES and their families, we can create meaningful

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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 Transformative grant will empower a patient community to accelerate collaborative research against CLOVES Syndrome, a rare genetic disorder KENNEBUNK, ME — (February 3, 2020) — Rare disease is anything but rare. As many as 7,000 rare diseases affect 400 million people globally. The vast majority are

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