Advocacy takes many forms. Maybe you post your story online, hoping it helps the next person feel less isolated. Maybe you help organize a fundraiser, or write to your local politician about the need for better research funding. Sometimes it’s as simple as listening—really listening—to another patient who’s scared or frustrated, and letting them know they’re not alone.
The truth is, rare diseases like HSP and PLS can make you feel invisible. But advocacy—whether it’s for yourself, for someone you love, or for the whole community—turns that invisibility on its head. It says, “I’m here. My experience matters. And I’m not giving up.”
This section lists many different ways to be an advocate.
Our Impact since our inception...
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Dollars Raised
Over 12,000,000 dollars for research!
