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August 15, 2018
It's been just over a month since we returned home from our first CLOVES Family Camp and we're still thinking about what fun we had!  It was truly a wonderful experience being able to meet and visit with new and old friends, to relax and connect on a beautiful lake and to enjoy...
June 14, 2018
A medical first: CLOVES Syndrome and overgrowth syndromes:remarkable improvement in the health of 19 pediatric and adult patients using a new therapeutic strategy. Dr. Guillaume Canaud at the Necker-Enfants Malades Hospital – AP-HP, the Paris Descartes University, Inserm (INEM...
January 22, 2018
We are pleased to announce an additional $10,000 research donation to Boston Children's Hospital.  We have committed to support a project looking for risk factors predicting common complications in CLOVES, using data from the 127 patients with CLOVES in the Lymphatic...
August 9, 2017
As our 4th CLOVES Awareness Day comes to an end, we wanted to let you know that CLOVEs Syndrome Community is making a $10,000 research donation to Boston Children's Hospital. This donation will directly support the current CLOVES/PIK3ca animal models and...
Cloves Awareness Tshirt
June 30, 2017
Check out our Booster Tee Shirt Campaign for CLOVES Awareness Day on August 3rd! We love someone with CLOVES Syndrome. If you are here, we bet you do too!Please help us to support CLOVES Syndrome Community and those we love with this ultra rare disease...
July 24, 2016
With back to school approaching, CLOVES Syndrome Community (CSC) is excited to announce the CSC Back to School Bucks award. CSC Back to School Bucks is a cash award that has been established to assist individuals impacted by CLOVES with expenses directly related to returning to...
cloves awareness day
July 22, 2016
Please join us in spreading awareness about CLOVES Syndrome on August 3rd.Check out our Awareness Page on our website for ways to help us to spread awareness about this very rare disease.
genetic mosaic
March 17, 2015
Our genes can mutate at any point in our lives. In rare cases, a mutation randomly occurs in a single cell of an embryo and gets carried forward only in the descendants of that particular cell, leaving its mark in some tissues, but not in others. This pattern of mutation, called...
contact registry
October 12, 2014
The CLOVES Syndrome Community contact registry will be used to inform individuals with CLOVES Syndrome and their guardians about:discoveries about CLOVES Syndrome that may impact care decisionsopportunities to participate in researchopportunities to contribute dataDetails about...
"Incredible You" Book
March 11, 2014
This book was created by author Lindsay Passodelis, in collaboration with CLOVES Syndrome Community. This book is geared towards kids who are between the ages of 8 and 13 years old, and is suitable for kids with CLOVES, their friends, and family members.In this book you will...
cloves awareness bracelet
January 16, 2014
Kennedy's Cause created this CLOVES awareness bracelet in honor of people with CLOVES Syndrome. $5 from each purchase will go to CLOVES Syndrome Community. Please check out their other products as well! And happy shopping!!