Newly Diagnosed? Welcome to our community



You are probably visiting this page because you or someone you know was recently diagnosed with CLOVES Syndrome or CLOVES-like Syndrome. We would like to welcome you to our community and share with you all of the resources we have to offer.  Please download our Welcome Letter here.



CLOVES Syndrome Website      


Two private online support groups:

On Facebook:  We have a secret/non-searchable support group.  To be added to our Facebook group, friend our WELCOME ACCOUNT at  


And our support group at:


CLOVES Syndrome Foundation 


E-Mail Newsletter                        


Online Store                                 


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.



Stay connected by subscribing to our free e-Newsletter at Mail Chimp: Please note that you will receive a confirmation email and must follow the steps to finalize your subscription. CLOVES Syndrome Community will never share or sell your contact information.  

While you are learning about this rare disease, you can read some inspirational stories of people with CLOVES, or learn about our the caring doctors on our Medical Advisory Board or visit our our Frequently Asked Questions page.  If you would like CLOVES Syndrome Community to mail you a welcome packet, please email us at


When you are ready, you can also participate by shopping at our online store (A portion of each purchase goes to the organization). We have great t-shirts and bumperstickers!



Kristen Davis, CLOVES Syndrome Community


How you can help

For US and International Donations

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