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: 09/18/2019 To: 09/20/2019
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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We Can’t Do it Alone: Structure and Governance for Research Collaborations
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Rare Therapies: A New Era for Genetic Medicines
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February 15, 2019
Passage Bio Raises $115.5 Million to Develop Gene Therapies for CNS Disease
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