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Advocacy

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.