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There are many ways to be an advocate for people living with CLOVES and rare diseases. One way is to contact your elected officials about your experience with living with a rare disease. Some information on how to contact your elected officials is available on this website.  

You can also participate in annual Rare Disease Day events in your hometown or in Washington DC.  Rare Disease Legislative Advocates maintains a comprehensive website on how to get involved.  

The CLOVES Syndrome Community Family Advisory Council is a collaborative effort between CLOVES Syndrome Community Board of Directors and people with CLOVES and their family members. If chosen to serve, you will be committing to a two-year term and will be required to sign a volunteer waiver, a non-disclosure agreement and consent to a background check.

Requirements:
You must be 18 years or older to be considered for a Family Advisory Council position. If you are a parent, your family member must have been diagnosed with CLOVES for at least two years. 

Goals:

Are you interested in helping our organization be strong and sustainable for many years to come?  If you answered yes, you're in the right place!

How am I helping CLOVES Syndrome Community?

 

Thank you for your interest in raising funds to support CLOVES Syndrome Community. Our success depends on the initiative and dedication of supporters like YOU. Each dollar that you raise will help CSC in the development of possible treatment options and further understanding of the disease, as well as provide critical support services and information to our community. We are truly grateful for your interest in making an impact and look forward to working with you.   

We're riding this year as an Independent Fundraising team at the Million Dollar Bike Ride in Philadelphia on June 13, 2020.  Our team is the CLOVES Riders for Research.

We're looking for team members to commit to a fundraising goal and to show up and ride with us!  There are options of 13, 34 and 72 miles. 

We have a rapidly growing community with of people CLOVES and a network of supporters who want to learn more.  One of the most powerful ways to spread awareness is by sharing your story.   Awareness leads to action and to understanding more about the disease and the unique needs of our community.  Thank you for sharing your story with us! 

 

We rely on an international army of volunteers, donors and supporters to make an impact on the lives of people living with CLOVES. We have a range of volunteer opportunities that can be done virtually or in your hometown. We rely on your support to keep this organization sustainable. Thank you for your interest in volunteering with CSC!

 

 

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