COMMUNITY
We have a rapidly growing community of people with CLOVES and a network of supporters who want to learn more.
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RARE AS ONE
We’re part of the Chan Zuckerberg Initiative’s Rare As One Network — a group of 30 patient-led organizations that are accelerating research and driving progress in the fight against rare diseases.
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
- 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, - 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 - Introducing the International PIK3CA Related Conditions Patient Registry
Make a difference for all affected with PIK3CA related conditions by participating in our multi-lingual patient registry A patient registry is an online system set up to - 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 - 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
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