Biennial Family Conference

Save the date!

Saturday August 7, 2021 is the next CLOVES Family Conference hosted by CLOVES Syndrome Community.   This will be a virtual event with activities for kids and programming for families and people with CLOVES.

Registration will open in April of 2021.  

Looking forward to our next conference with you all!!

Thanks to Lindsay for providing this recap of our 2019 Family Conference

What kids and families are saying about the CLOVES Family Conference:

“The CLOVES conference was everything I hoped it would be and more. I met a team of brilliant Doctors that know more about my condition than anyone ever has in my 50 years of life. I was learning from them for once rather than trying to explain to them what I have. While this is a very complex condition, I feel as though I have a better understanding of the how’s and why’s now. I am thrilled to have found answers and a possibility of improving my medical situation and longevity. The team of Doctors/researchers is truly amazing. I also loved meeting the children with CLOVES and talking with their parents. I have the unique opportunity to be “older” and can hopefully help some of the children and parents recognize that although this is a huge obstacle at times, we really can enjoy life and go on to do the things that are important to us as individuals. I have so much admiration for the parents that are working hard to find answers for their children.”   – Adult with CLOVES Syndrome

“I made a new best friend here!” – Child with CLOVES

“Why did we travel to Boston? I came to connect my child to this team that has seen more people with CLOVES than anywhere else in the world. It was tremendously powerful to interact with such dedicated doctors and staff, and to know they are making progress. And we traveled to be among other families affected by CLOVES, and know that we have an understanding and support from our shared experience. I saw a lot of resilience and hope in that room. It’s worth it for a connection that will help carry them through the hard times that come with CLOVES.” – Mom of a child with CLOVES

“We just wanted to say you are all some of the tallest and strongest people we have ever met and thank you for making us part of your family.  We have learned so much. You all made us feel so welcome and just wanted to let you know no matter how hard the struggle may be, you are doing an amazing job.  Stand tall and stand firm.   Love from all of us.” – Parents of a child with CLOVES

“This is more fun than our own summer camp!” – Child with CLOVES

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