Scientific Meeting Recap
October 28th-29th 2021 was the first International Scientific Meeting for PIK3CA Related Conditions which was hosted and sponsored by CLOVES Syndrome Community. We hosted this meeting as part of our…
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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…
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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…
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Our 2nd 2021 Research Recipient
We are pleased to announce the second recipient of our 2021 Research Grant. Dr. Robert Semple will receive a $25,000 grant for the project titled “Human Pluripotent Stem Cells as…
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Our 2021 Research Grant Recipient
We are pleased to announce the recipient of our 2021 Research Grant. Ana Angulo-Urarte will receive a $25,000 grant for the project titled “Identifying the molecular impact of PIK3CA variants…
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Vascular Anomalies Communication (VACOM) Research Study
We’re pleased to be supporting Dr. Bryan Sisk’s research study titled “Vascular anomalies communication” (VACOM) with a $10,000 grant. Please read about this research study below. We’ll share additional information…
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Accelerating research with AllStripes
CLOVES Syndrome Community is excited to partner with the medical data science company AllStripes to create a research database that will power new PIK3CA-related overgrowth spectrum (PROS) research studies. To…
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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…
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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…
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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 –…
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$20,000 Research Donation
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…
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