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: 09/21/2020 To: 09/23/2020
08:00 AM - 05:00 PM UTC-12:00
1380 Harbor Island Drive, San Diego, California, United States of America
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

From Molecules to Medicine: Clinical Research
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Building Relationships with Your Representatives
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News

January 23, 2020
Rare Leader: Eric Cole, Executive Director, Dandy-Walker Alliance
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January 23, 2020
Genentech’s Risdiplam Meets Primary Endpoint in Pivotal SMA Type 1 Trial in Infants
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January 22, 2020
Making the Value Proposition for Rare Disease Therapies
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