What We Do


Welcome to CLOVES Syndrome Community! We are so glad you are here.
If you or a family member are newly diagnosed, we know that you might be worried, exhausted and wondering what to do next. We’ve been there and know how concerned you might be feeling. We want you to know that you are not alone.

CLOVES Syndrome Community is so important to our family. It’s been great to get to know other families facing the same challenges as our son. We love providing feedback to other families as well as letting our son know he is not alone. This community has been a great resource and help in our journey with CLOVES syndrome. We are blessed and so thankful for this organization.
– Mom of Landon

We are so very grateful to CLOVES Syndrome Community for all of the information, emotional support, advice and financial support over the years. Having a child with a rare condition is hard, but being alone is even harder. As a single mom I have struggled numerous times with choices that I have had to make for my son but I have been able to come to this group and ask for help and guidance. That has meant so very much to me. Having a place where my son can come to and see he isn’t the only one dealing with CLOVES has meant so very much to him. We are beyond grateful for the financial support that we have received over the years. It has been a blessing to receive funds from Back to School Bucks and the Family Assistance Program. Those funds have helped us pay for his special needs stroller, his sneakers with lifts and inserts and clothes for the beginning of the school year. Thank you so very much!
– Mimi

Connect with Others

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 and through our in person events.

If you would like CLOVES Syndrome Community to mail you a welcome packet, please email us at [email protected].

To join our secret Facebook Group for people with CLOVES and/or their primary caregiver(s), please friend our welcome account.

Make a Donation

Your contribution will help our organization be strong and sustainable for many years to come.


“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