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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.  


Telling your story and about life with a rare disease is a great way to advocate for people with CLOVES.  

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 and a non-disclosure agreement.

You must be 18 years or older to be considered for a Family Advisory Council position.
You/your family member must have been diagnosed with CLOVES for at least two years.

More information coming soon!

We have a rapidly growing community with of people CLOVES and an army 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!