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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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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November 21, 2019
FDA Approves Alnylam’s RNAi Drug Givlaari for AHP Attacks
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November 20, 2019
Reata Raises $505 Million to Advance Rare Disease Drugs
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November 19, 2019
Dicerna and Novo Nordisk Partner in RNAi Therapies for Liver Diseases
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