Welcome! You are probably visiting this page because you or someone you know was recently diagnosed with CLOVES Syndrome or PIK3CA Related Overgrowth Spectrum (PROS). We would like to welcome you to our community and share with you all of the resources we have to offer.
Our online support group:
- On Facebook, if you are a primary caregiver or person with CLOVES, please friend our welcome account to be added to our secret/non-searchable group on Facebook.
- E-Mail Newsletter
- CLOVES Merchandise available for purchase
- Our CLOVES Screening Guidelines developed by Boston Children’s Hospital are a great resource to share with your providers.
- Our Frequently Asked Questions page is a great place for information.
- Sign up for our CLOVES registry to stay up to date about research and ways to contribute data.
- For any questions, please call us at (833) 425-6837.
We feel that it is important to connect with others who understand what you are going through and can offer support during difficult times. We encourage you to get involved by meeting other families online.
If you would like CLOVES Syndrome Community to mail you a welcome packet, please email us at [email protected]
Kristen Davis, CLOVES Syndrome Community
CLOVES Syndrome Community
PO Box 406 West Kennebunk, ME 04094
Toll free (833)-4CLOVES