News

News from the lab – December 2020

News from the lab – December 2020

adminDec 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 over?” As usual, this question triggered substantial reflections. It is…

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Spreading awareness for CLOVES Awareness Day

Spreading awareness for CLOVES Awareness Day

adminJul 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 to them.   We believe that your opinion matters and that…

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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

adminFeb 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 — (February 3, 2020) — Rare disease is anything but rare.…

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$20,000 Research Donation

$20,000 Research Donation

adminMar 10, 20191 min read

Thanks to your support and our successful Fall 2018 Fundraising efforts, we’ve made another research donation. On February 27, 2019 we donated $20,000 to Canaud Lab for their continued work on CLOVES/PROS. This donation will be used for the creation…

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