NORD hosts a variety of events throughout the year. Patients and families can find support from these events and be a part of the progress that is being made for the rare disease community.
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.
Through Running for Rare, NORD’s signature charity marathon team, runners join together to raise awareness for rare diseases while fundraising to support undiagnosed patients. This special team is made up of passionate and committed individuals seeking to make a meaningful difference for the rare community.
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.
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.
These are free meetings that give attendees the opportunity to connect, learn, and share with other patient organization leaders and advocates. This free networking program provides the opportunity to learn all about the Rare Action Network and meet the NORD Rare Action Network team. We also discuss current legislation in your state and upcoming opportunities to get involved in advocacy.