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 easy it is: AllStripes did all of the work to pull together my daughter’s records,
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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 patient led PIK3CA Related Conditions Research Network development with the Chan Zuckerberg Initiative Rare As One Network. The meeting was a great success and we
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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 work will enable CSC to deploy their resources to effectively seek out new and better
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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 a Model to Interrogate Pathogenesis and Developmental Origins of CLOVES” This project will investigate human induced pluripotent stem cells (iPSCs) as a model system to
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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 in PROS towards stratification of patients and personalized medicine.” This research project will enhance the fundamental understanding of the physiological and molecular insight into PIK3CA-related overgrowth spectrum
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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 with our community soon about how you can participate in this study. Vascular anomalies are a group of rare disorders that can be disfiguring, painful,
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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 move this research forward, we’re looking for families/patients willing to contribute their medical records to make this effort as strong as possible. All data shared
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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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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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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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