Bringing together patients, physicians, and researchers to improve the lives of those affected by these rare disorders
Join One of Our Research Studies
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.
Find a StudyPrimary Ciliary Dyskinesia Over Time: What We’re Learning from Natural History Studies
Stephanie D. Davis, MD, and Thomas Ferkol, MD, share more about this study, while PCD family member Tori Eastvold shares what it’s like to participate.
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.
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.