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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.

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.

Rare Action Network® Meetings

The Rare Action Network®, powered by the National Organization for Rare Disorders (NORD), serves to connect and empower a unified network of individuals and organizations with tools, training and resources to become effective advocates for rare diseases through national and state-based initiatives across the United States. Included in these resources are free meetings for rare disease advocates to connect with one another and enhance their advocacy skills.

Find a meeting near you!