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.

Events

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
Details
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
Details
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Resources

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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News

August 23, 2019
Targeting the Epigenetic Drivers of Cancer
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August 23, 2019
Gene Linked to Rare Disorder also Plays a Key Role in Alzheimer’s
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August 22, 2019
Rare Leader: Isabel Jordan, Chair, Rare Disease Foundation
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