Resources

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Learn more about CLOVES or join the CLOVES community. Their resource and support page is a great resource for those in need of assistance or interested in learning about what resources are available through the CLOVES Community. CLOVES Syndrome Awareness day is August 3rd every year.

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.

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Face2Face Healing is a wonderful resource for those coping with a physical difference. This organization provides emotional support to their clients and caregivers, education on available programs to assist in their recovery, support groups, and resources.
AllStripes
AllStripes’ mission is to unlock new treatments for people with rare diseases. They are the first research platform dedicated to rare diseases and make it easy for patients to contribute to new treatment studies from home. AllStripes collects and analyzes your de-identified medical records (if you sign up) to help power faster, better drug development for your condition. Signing up is easy if you’re interested!
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. View how to obtain your hard copy here or read the PDF version.
Four Leaf Clovers is a story that parallels between children with CLOVES Syndrome and those without, focusing on acceptance, inclusion, and diversity. You can make a donation of $25 here (indicate you’d like a copy of Four Leaf Clovers in the memo line) for a hard copy or you can read it online!

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!

There is also a whole section on adaptive and extra wide shoes under the resources page on CLOVES Syndrome Community’s website.

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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 in an effort to expand research and support. 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. Each year, we “show 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 ways you can get involved next year.