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Check out the latest updates from our community of members living with a rare disease.

Latest Updates

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How are you feeling?
Gina Miller
Commented on the post What Makes a Rare Disease Patient Advocate?
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CommunityMember9785962
Commented on the post What Makes a Rare Disease Patient Advocate?
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Donna.Flood-Amaya
Commented on the post Staying Informed on Your Rare Disease for Better Advocacy
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Annie-Danielle Grenier
Shared the post Staying Informed on Your Rare Disease for Better Advocacy
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Donna.Flood-Amaya
Replied to status My goodness things have been so chaotic here that I haven't posted an update for a couple of weeks. Wow. I think I told you all... or maybe I just...
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Lynjbennett65
Replied to status My goodness things have been so chaotic here that I haven't posted an update for a couple of weeks. Wow. I think I told you all... or maybe I just...
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Jessica Hanson
Patient Leader
Erin Leibowitz
Patient Leader
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Patient Leader
Elle Cole
Patient Leader

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