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
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Resources

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News

October 18, 2019
A Festival of Moving Pictures
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October 17, 2019
Stealth Says Experimental Drug Improves Cardiac Function in Barth Syndrome Patients
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October 17, 2019
Rare Leader: Ginger Spitzer, Past Executive Director, Foundation for Sarcoidosis Research
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October 16, 2019
AI Drug Developer Healx Secures $56 million to Launch Global Rare Disease Accelerator Program
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October 16, 2019
Editas and AskBio Team Up to Develop Novel Treatments for Neurological Diseases
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