Resources

cloveslogo-noshadow

Learn more about CLOVES or join the CLOVES community. Their resource page is a great resource for those in need of assistance or interested in learning about what resources are available through the CLOVES Community.


Boston Children’s Hospital has an abundance of information on CLOVES Syndrome. You can also meet the Vascular Anomalies Team, a team at Boston Children’s dedicated to the treatment and care of CLOVES patients and other related syndromes.


Picture

Face2Face Healing is a wonderful resource for those struggling to come to terms with a disfigurement. Here, you can read about others going through similar hardships as well as connect with them.

"Incredible You" Book
For any child with CLOVES, the book Incredible You is a great way to learn about what it’s like to live with this rare syndrome, what kind of experiences to expect, and how to cope with the hardships.
|
The newest piece of children’s literature is Four Leave Clovers, a story that parallels between children with CLOVES Syndrome and those without, focusing on acceptance, inclusion, and diversity.

Looking for shoes to fit you or your child who has an overgrown foot? Big N Wide Shoes has a wide selection of shoes that may be a comfortable fit!


logo-rare-disease-day

Rare Disease Day is the last day of February every year. It’s a day to share our stories and spread awareness on the reality of living with rare diseases. Take a look at their website where you can read about the day, the campaign, and people’s stories. If you or a loved one has a rare disease, you can submit your story to their website. This year, we “showed our stripes” to advocate for rare diseases. With its distinctive stripes, the zebra is the official symbol of rare diseases in the U.S. Learn about the 10 ways YOU can get involved next year.