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Participate in Events

NORD hosts many events throughout the year, including the ones described below.


View our calendar to see all upcoming events in the rare disease community.

Rare Disease Day in Utah

Rare Impact Awards

Rare Diseases and Orphan Products Summit

NORD’s Rare Diseases and Orphan Products Summit, convenes in October each year in metro Washington D.C. and draws together the top leaders from the FDA, NIH, patient organizations, industry, payers and research institutions to address issues of critical importance to the rare disease community.

Learn more here.

Running for Rare Diseases

Running for Rare Diseases is a special team made up of passionate and committed individuals seeking to make a meaningful difference for the rare disease community. The funds raised by the Running for Rare Diseases Team will support the NORD/NIH Undiagnosed Diseases Network (UDN).

Learn more about this running team and how you can get involved.

Disease-Specific Regional Meetings

NORD’s experienced team hosts one-day workshops for patients and caregivers throughout the U.S. for networking, sharing information and interaction with medical experts. While the primary purpose is education, these meetings provide vital emotional support through connection with others with the same diagnosis.

Find a meeting near you!

Regional Membership Meetings

NORD’s regional membership meetings are designed to help patient organization leaders meet, network, learn and share best practices. They encourage knowledge sharing and foster collaboration. These meetings are an opportunity to create meaningful connections that continue throughout the year.

Find a meeting near you! 

Corporate Council Meetings

The Corporate Council holds in-person meetings twice a year, along with monthly teleconferences and frequent updates from NORD. At the meetings, industry representatives interact with key officials and thought leaders on topics related to policy, research and regulatory affairs.

Portraits of Courage Celebration

In previous years, NORD gathered the rare disease community for its “Portraits of Courage Celebration” in Washington, D.C.  Learn more here.