Member Spotlight: CLOVES Syndrome Community

The mission of CLOVES Syndrome Community (CSC) is to support, educate, empower and improve the lives of those affected by CLOVES syndrome. Its vision is to have an improved quality of life for people with CLOVES syndrome.

1.) What does it mean to you personally to be a patient organization serving the rare community?

I started this organization back in 2009, when my daughter was diagnosed with CLOVES Syndrome.  At that time, there were no resources for families and children with CLOVES.  I created an organization (that was exactly what I was looking for in terms of support and education) but that didn’t exist when my daughter was diagnosed.  I  take great pride in the rapid growth of the organization and opportunities we have created for people withCLOVES in such a short window of time.  I am so grateful that newly diagnosed families now have a space to land for support and resources.

2.) What do you find your patient community values most from your organization?

Support, information/education, resources, research opportunities and our family conference which happens every other year.

3.) What are some of the challenges your organization has faced?

Explaining such a rare and complex disease in a user-friendly way.  Fundraising.

4.) What has been your most successful awareness campaign and/or fundraising event?

Hmmmm……not sure.  We do an annual direct appeal mailing.  And we’ve held a few local fundraisers in ME, RI and OK.