Cloves Syndrome Community

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

    • Our 2nd 2021 Research Recipient
      We are pleased to announce the second recipient of our 2021 Research Grant.  Dr. Robert Semple will receive a $25,000 grant for the project titled “Human Pluripotent
    • Our 2021 Research Grant Recipient
      We are pleased to announce the recipient of our 2021 Research Grant.  Ana Angulo-Urarte will receive a $25,000 grant for the project titled “Identifying the molecular impact
    • Vascular Anomalies Communication (VACOM) Research Study
      We’re pleased to be supporting Dr. Bryan Sisk’s research study titled “Vascular anomalies communication” (VACOM) with a $10,000 grant.   Please read about this research study below.  We’ll
    • Accelerating research with AllStripes
      CLOVES Syndrome Community is excited to partner with the medical data science company AllStripes to create a research database that will power new PIK3CA-related overgrowth spectrum (PROS)
    • 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,
    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

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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