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Welcome to CLOVES Syndrome Community
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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.
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CLOVES and PIK3CA Related Conditions Research Network
A collaborative patient-led research network
CLOVES Syndrome Community is proud to be launching the CLOVES and PIK3CA Related Conditions Research Network, a patient and caregiver led research network that encourages the sharing of ideas among patients, scientists, and physicians.
CLOVES Syndrome Community is one of thirty organizations chosen to participate in the Rare As One Network, which will provide CSC with capacity building tools, resources, funding, training and support, to strengthen our expanding patient community and scientific goals.
Goals
CLOVES Syndrome Community is working to create a patient-led collaborative research network in order to broaden the medical knowledge base, accelerate treatment options and improve quality of life for people with CLOVES and PIK3CA Related Conditions.
A patient led collaborative research network pulls together a community of stakeholders – including people with specific diseases, their family members, researchers and physicians – to discover and prioritize critical research questions. The research network relies on the collective voice to identify the most pressing questions and knowledge gaps about a disease. It recruits the most qualified researchers to help answer these questions and to conduct these studies.
We believe in the power of the collective. We believe in the power of your experience and your voice. We believe that together, we can make a change in the lives of people with CLOVES and PIK3CA Related Conditions.
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.
The Chan Zuckerberg Initiative's Rare As One Project aims to strengthen the efforts of patient-led groups. It will help communities of patients, researchers, and clinicians work together to advance progress against their diseases and scale these efforts. Working in partnership with the rare disease community, the Rare As One Project will create shared infrastructure to lower the barriers to patient-led research and enable patient communities to learn from one another.
No one is more motivated than patients to drive progress against their disease. 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.
2021 International Scientific Meeting for PIK3CA related conditions
CLOVES Syndrome Community, in collaboration with Dr. Denise Adams of Children's Hospital of Philadelphia, Dr. Miikka Vikkula of de Duve Institute and Dr. Jean Zhao of Dana-Farber Cancer Institute, is planning a virtual International Scientific Meeting for PIK3CA related conditions. We are hosting this meeting as part of our patient led research network development with the Rare As One Network.
We will meet virtually on Thursday October 28 and Friday October 29, 2021
Please sign up to receive information about the registration process, abstract submission timeline and agenda.
Address:
CLOVES Syndrome Community
PO BOX 406
West Kennebunk, ME 04094