Did you know approximately 1 in 10 people have a rare disorder? That's about 30 million people in the United States, and around 300 million worldwide! Rare Disease Day is held the last day in February every year to collectively raise awareness for rare diseases (like CLOVES Syndrome!)

"Some days CLOVES is loud. Pain days, swelling days, blood draw days, ER days. Other days it’s quiet, almost invisible, until someone asks a question or stares a second too long." - Mom to a child with CLOVES

As an organization, we are honored to strive each day to improve the lives of people with CLOVES Syndrome. We do this through support initiatives like our Family Assistance Program and Back-to-School Bucks; through social initiatives like Betsy's Camp & Retreat; by fostering relationships with researchers and scientists all over the world who share our mission, and more. We can't wait to discover what lies ahead for this tiny & mighty community and organization. The future is bright for people with CLOVES Syndrome in large part thanks to our donors and partners, but there is still more work to be done!

"CLOVES has taught me that caring for myself and my health isn't just a to-do list; it's an act of strength. 💪" - Adult with CLOVES

This year, we are improving life for those with CLOVES Syndrome through the following new projects:

Hosting the first International CLOVES Syndrome Summit, a year-long virtual learning series
Revising the CLOVES Syndrome Clinical Care Guidelines, first written in 2014
Updating our website to make it easier for newly diagnosed individuals/families, and medical professionals to find information and connection
Conducting a patient experience survey to learn from our community
Laying the foundation for a tissue donation repository with our researchers in the UK

And more! All made possible by donors like you. 💚

Read on for an interview with eight-year-old Daphne, as she gives a snapshot of her life as a kid with CLOVES. (Interview and photo shared with permission.)

Introducing Daphne

Can you introduce yourself and tell me a few things about you?

My name is Daphne. I’m 8 years old. I like dogs. I have a pet fish named Blue. I love Labubus. I like the color teal.

What rare condition were you born with?

I have CLOVES syndrome. I have a friend named Kiki that also has CLOVES.

What is CLOVES?

It happens when you are born and you have it for your whole life. How it happens is that one of your genes changes and that is what causes it. It affects part of your body to grow bigger than it is supposed to be. It can also cause something with your veins.

What is the hardest thing about having CLOVES?

It can sometimes be hard having CLOVES syndrome. The hardest thing is you sometimes have to have a lot of surgeries. It feels uncomfortable when people ask me about my foot. It makes me feel like I am different from other kids, because I am.

What is the best thing about having CLOVES?

The best thing about having CLOVES is I can go to fun camps with other kids who have rare diseases. Another fun thing is when I get to meet someone else who has CLOVES syndrome and get to know them and play with them because you know they have gone through most of the stuff you have gone through so they know what it is like.

For people who have never heard of CLOVES, what would you like them to know about this rare disease?

I would like them to know that it is hard to have. It would be nice if when they met me they would say “that is a cool disease to have.”

For more stories from our community, follow us on Instagram and Facebook.

CLOVES Syndrome Community | Rare Disease Day 2026

By Cloves Syndrome Community

CLOVES Syndrome Community | Rare Disease Day 2026