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CLOVES Awareness day is every year on August 3rd.  Join us in raising awareness, support, and funds for CLOVES Syndrome in the weeks leading up to August 3rd. We also post awareness images on Instagram and Facebook for you to share with friends and family.

 

CLOVES Family Camp is an annual opportunity that focuses on community, connection, relaxation and fun.

Beginning in 2020, CLOVES Family Camp will be renamed Betsy’s Camp, in memory of an exceptional woman, Betsy Lewis, who lived her life with CLOVES Syndrome.   Betsy’s presence, and the way she lived her life, made a huge impact on all of us in the CLOVES community.

Betsy was an elementary school teacher for 30 years.  Her work with children touched an incredible number of people.  Betsy and her husband Chris led an adventurous life and traveled the world, in spite of her physical challenges.  Her adventures continued when she became a mom to daughters Daisy and Rosie. 

Our Biennial Family Conference is an opportunity for learning, connection and meeting with the world's leading CLOVES experts to hear about quality of life, treatment and living with CLOVES.

In this section, you'll find our two CLOVES publications for kids,  blogs, e-magazines, access to our secret FaceBook group, as well as resources for coping with progressive and chronic illness. 

Some people with CLOVES/PROS receive Special Education services in the public school setting. Learn about Special Education laws, your rights, resources to have on hand and some pro tips about how to keep all of your educational paperwork organized.

The CLOVES Syndrome Community Family Assistance Program provides financial relief to families impacted by CLOVES Syndrome. We are a community that understands CLOVES Syndrome and the associated financial burdens. Our mission with the CSC Family Assistance program is to alleviate some of the costs associated with medical care, medical-related travel, and other CLOVES-related needs.

A partial list of multidisciplinary Vascular Anomalies Centers and treatment centers that may be able to provide treatment, monitoring and oversight for CLOVES/PROS.

Below please list of private and commercial providers who may be able to get you/your child to out of state medical treatment.

Angel Flight, now called “Air Charity Network”: www.aircharitynetwork.org

Family’s home airport must be less than 1000 miles from Boston and child/adult must be able to fly on small aircrafts.

Miracle Flights: www.miracleflights.org . This organization uses volunteer pilots, corporate aircrafts AND commercial flights.

Community of Care RARE Patient Impact Grant - Applications currently closed 9/17/2020

CLOVES Syndrome Community has been awarded a $15,000 grant from Global Genes to support the needs of our patients and their families, impacted by COVID-19.  The purpose of this grant is to distribute continuity of care financial support to rare disease families in need during the COVID-19 crisis.  Supporting CLOVES patients and families is one of the key pillars of our mission.  We are proud to be able to offer this support to our families. 

Finding well fitting and appropriate footwear can be a huge challenge for people living with CLOVES. Our shoe resources page includes shoe providers to purchase two sizes of shoes, shoe modifications, adaptive/non-traditional footwear and 3D printed shoes.