Research News from the Lab
Written by: Ralitsa Madsen At the time of writing this newsletter for CLOVES Syndrome Community (CSC), I realise that 29 February is just around the corner (24h and 15 minutes to go!). This is a special date for CSC and…
.
CLOVES Syndrome Community and NORD® Launch Natural History Study of CLOVES Syndrome
Research study is open to participants worldwide to advance understanding and treatments for rare disease causing CLOVES Syndrome. December 1, 2023 — Today, CLOVES Syndrome Community and the National Organization for Rare Disorders (NORD) launched a study with global reach…
.
Changes in leadership at CLOVES Syndrome Community
CLOVES SYNDROME COMMUNITY EXECUTIVE DIRECTOR KRISTEN DAVIS TO STEP DOWN NEXT YEAR KENNEBUNK, ME — (May 16, 2023) – The Board of Directors of CLOVES Syndrome Community today announced the planned transition of its longstanding Executive Director, Kristen Davis. Kristen informed…
.
We’re proud to help fund the first Zebrafish models of CLOVES
We’re pleased to announce a $100,000 research donation to the University of Edinburgh – Patton Lab – to develop zebrafish models of CLOVES. Dr. Hannah Brunsdon has written a lay summary about this project below. “People with CLOVES syndrome…
.
First publication from the VACOM Research Study
Since 2021, CLOVES Syndrome Community has supported the work of Dr. Bryan Sisk, Assistant Professor of Pediatric Hematology and Oncology at Bioethics Research Center with conducting a research study titled “Vascular anomalies communication” (VACOM). Vascular anomalies are a group of…
.