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Upcoming Events

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Hear from NORD’s registry communit...

NORD IAMRARE Registry users share their thoughts on how their patient registries are benefiting their communities and how they are using the data.

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Rare Disease Day 2019 Notes and Successe...

Your stripes were shown! See how the rare disease community worked together to make Rare Disease Day 2019 reach the world at large!

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National Gathering of the Rare Disease C...

Living Rare, Living Stronger will bring the rare community together with physicians, medical students, and allied health professionals for a program of learning, sharing and connecting.

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Resources and tools to help you

Rare Action Network®

State by State Advocacy Information

Patient Assistance

Patient Assistance Programs

Rare Disease Database

Reports on over 1200 rare diseases

Rare Disease Day

Official US website for RDD
Find a Patient Organization

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Regional Patient Meetings

Learn about upcoming meetings for patients and caregivers. Learn more >

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Alone we are rare. Together we are strong.®