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
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Resources

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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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August 22, 2019
Pfizer to Invest $500 Million in Gene Therapy Manufacturing Facility in North Carolina
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August 22, 2019
Chinook Raises $65 Million to Advance Precision Therapies for Rare Kidney Diseases
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August 22, 2019
Retrophin PKAN Therapy Fails in Late Stage Trial
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