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Welcome to CLOVES Syndrome Community
The vision of CLOVES Syndrome Community is an improved quality of life for those living with CLOVES syndrome. Our mission is to support, educate, empower and improve the lives of those affected by CLOVES syndrome.
CLOVES Syndrome Community does this by cultivating a thriving patient community, convening medical and family conferences, publishing books for children, funding medical research and assisting families with long term medical costs. We also bring families together for Betsy’s Camp, an annual opportunity for community, fun and relaxation. CLOVES Syndrome Community is part of the Chan Zuckerberg Initiative’s Rare As One Network— a group of 30 patient-led organizations that are driving progress in the fight against rare diseases. We’re proud to be creating a patient-led research network to accelerate research and find treatment options for people with CLOVES and PIK3CA Related Conditions.
WHAT IS CLOVES SYNDROME?
CLOVES Syndrome stands for Congenital, Lipomatous, Overgrowth, Vascular Malformations, Epidermal Nevi and Spinal/Skeletal Anomalies and/or Scoliosis and was identified simultaneously and independently by Saap et al. and Alomari. CLOVES is caused by a somatic genetic mutation in a gene called PIK3CA that increases the activity of the gene. CLOVES belongs to a category of diseases known as PIK3CA-related overgrowth spectrum or PROS.
LATEST NEWS & UPDATES
- CLOVES SYNDROME COMMUNITY NAMES LAUREN BEAUREGARD AS NEW EXECUTIVE DIRECTOR
The Board of Directors of CLOVES Syndrome Community today announced the appointment of Lauren Beauregard as its new executive director, succeeding Kristen Davis who has guided the - 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 - 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 - 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 - 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
SHARE YOUR STORY
We have a rapidly growing community of people with CLOVES and a network of supporters who want to learn more. One of the most powerful ways to spread awareness is by sharing your story.
Awareness leads to action and to understanding more about the disease and the unique needs of our community. Thank you for sharing your story with us!
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Your contribution will sustain and support our vision of an improved quality of life for people with CLOVES syndrome
Donate“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”
– Margaret Mead