US-based National Organization of Rare Diseases (NORD) has unveiled the Rare Action Network - an advocacy network that serves as a broad spectrum of stakeholders ranging from patients, to their families, caregivers, and friends, researchers, industry representatives, physicians and academia. While working predominantly at the state level, the network will filter information up to NORD’s US federal policy team to help address issues of US concern. Among other benefits, this expansive network will enable connecting patients, caregivers, and stakeholders, participate in regional and local events, learn and address the nation’s leading issues and develop relationships with key decision-makers and opinion leaders.

More information: NORD's website