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
- 2025 PROS Community Science Update
from Dr Ralitsa Madsen & Team Dear CLOVES Syndrome Community readers, As we approach the festive season, I am once again excited to share this year’s update - THE EVOLVING LANDSCAPE OF CHARITABLE DEDUCTIONS
Josh Beauregard is a Corporate Controller, a CPA, and Dad to Maddox (13) and Kiki (10). He’s also a caregiver-member of our CLOVES Community, and was kind - CSC 2025 Summer Camps
We are excited to announce that for 2025, our community will have TWO Summer Camp opportunities to choose from! Read on for details. Betsy’s Family Camp & - 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
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!
Make a Donation
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