Cloves Syndrome Community
Support, Research & Education to improve the quality of life for ppl with CLOVES. Rare, progressive disease with a + PIK3ca mutation. Tweets by @kristenpdavis CLOVES Syndrome Community - Support, Research and Education CLOVES Syndrome Community supports, educates, empowers and improves the lives of those affected by CLOVES syndrome.
Founded
2011
2700
X (Twitter)
1069
Address
Browns Point
Cloves Syndrome Community - Cloves Syndrome Community Cloves Syndrome Community The CLOVES Syndrome Registry CONTACT REGISTRY SUBSCRIBE TO OUR MAILING LIST 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 Betsys Camp an annual opportunity for community fun and relaxation.
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Together, we can make a real impact in communities around the world. Help us bring hope and support.
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From Social media
News about Cloves Syndrome Community from their social media (Facebook and X).
- Cloves Syndrome Community
- 2025-05-28
30 Day Spark ends May 30. Comment and let us know how you're doing with your challenge. (fb) ... more
Liked (1) Commented (2)
- Cloves Syndrome Community
- 2025-05-26
Have you registered for Betsy's Camp yet. (fb) ... more
Liked (3) Commented (0)Discussions
Odpovědí v diskuzi
1
1. What strategies can we implement to raise awareness about CLOVES Syndrome and the experiences of those living with this condition within broader healthcare communities?
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Brooklyn Simmons
2 days ago
Odpovědí v diskuzi
1
2. How can we foster collaboration between families affected by CLOVES Syndrome and researchers to ensure that patient voices are central in shaping future research initiatives?
View
Brooklyn Simmons
2 days ago
Latest reviews
Together, we can make a real impact in communities around the world. Help us bring hope and support.
So inspired by the incredible work the CLOVES Syndrome Community is doing! Together, we can create a supportive network for those affected and bring hope for better treatments. 💙 #CLOVESSupport
Brooklyn Simmons
Product Manager
Absolutely love the initiatives being taken by the CLOVES Syndrome Community! Empowering individuals and families while raising awareness is so crucial. Thank you for making a difference! 🌟 #CLOVESAwareness
Brooklyn Simmons
Product Manager
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