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

February 25, 2020
Rare Disease Advocates Take to the Hill
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February 25, 2020
FDA Approves Asuragen’s Genetic Test to Diagnose Fragile X Syndrome
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February 25, 2020
Raremark Partners with TriNetX to Connect Rare Disease Patients to Clinical Trials
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