Ways to Engage

Join the Portal

Take the next step to connect with the rare disease community. Create a profile to connect with others, read resources and post to the event hub.

Share Your Story

It’s our experiences that shapes you and inspires others. Share your rare story with us.


RARE Patient Advocacy Summit
From: 09/21/2020 To: 09/23/2020
08:00 AM - 05:00 PM UTC-12:00
1380 Harbor Island Drive, San Diego, California, United States of America
RARE on the Road Boston
From: 03/30/2019
08:30 AM - 04:30 PM UTC-12:00
415 Main Street, Cambridge, Massachusetts, United States of America
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From Molecules to Medicine: Clinical Research
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Building Relationships with Your Representatives
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October 20, 2019
NEXT: James Valentine of Hyman,Phelps & McNamara Discusses the Future of Rare Disease
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October 18, 2019
A Festival of Moving Pictures
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October 17, 2019
Stealth Says Experimental Drug Improves Cardiac Function in Barth Syndrome Patients
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