A Rare Reality
A Rare Reality
A Rare Reality, Episode Three: Talking Rare Disease Week!
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Rare Disease Week on Capitol Hill is just a few weeks away and we want you to get involved! So what is it? How does it work? What do you do? How do you advocate? So many questions and so many answers for you as we sit down with the experts helping to put on an incredible event. We talk with Sarita Edwards, Rare Disease Week on Capitol Hill Advocacy Vice Chair, and Shannon von Felden, Senior Director of Advocacy for EveryLife Foundation for Rare Diseases. As they say, it will truly change your life!

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