Cloves Syndrome Community

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    RARE AS ONE

    We’re part of the Chan Zuckerberg Initiative’s Rare As One Network — a group of 50 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

    • Rare Disease Day 2022 Recap!
      Thank You to the 15 CLOVES families who shared their Life Mottos and stories with us. Their journeys have shown how real, strong, brave, worried, loved, and
    • Year Three Funding for CLOVES Syndrome Community
      CLOVES Syndrome Community applied for and was selected to receive an additional year of funding ($150,000) and resources with the Rare As One Network! This patient-led research
    • Year Two – VACOM Research Study
      We are pleased to support the second year of Dr. Bryan Sisk’s and Dr. Anna Kerr’s research study titled “Vascular Anomalies Communication” (VACOM) with a $9408 grant.
    • Why We Decided to Partner With a Research Platform
      We first learned about AllStripes — a research platform designed specifically for rare disease — in the summer of 2019, when I was able to trial the
    • Scientific Meeting Recap
      October 28th-29th 2021 was the first International Scientific Meeting for PIK3CA Related Conditions which was hosted and sponsored by CLOVES Syndrome Community. We hosted this meeting as
    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

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    “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