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Bringing together patients, physicians, and researchers to improve the lives of those affected by these rare disorders

 

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Research offers no guarantees, but discoveries cannot be made without your help. Every active role a patient takes is one step closer to finding new treatments.

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Primary Ciliary Dyskinesia Over Time: What We’re Learning from Natural History Studies

National Survey Reveals Impact of COVID-19 on People Living with Rare Diseases and Their Families

The devastating impact of COVID-19 on the general population is well-documented—but less is known about the millions of people living with rare diseases.

Flyer advertising the survey appearing on a laptop screen.

Join the RDCRN for Rare Disease Day at NIH on February 29, 2024

Don’t miss the in-person and virtual celebration of Rare Disease Day at NIH on Thursday, February 29, 2024, from 9 am to 5 pm EST.

Rare Disease Day at NIH. February 29, 2024. #RDDNIH.