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 move this research forward, we’re looking for families/patients willing to…
.
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…
.
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…
.
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…
.
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.…
.