Articles and downloadable materials to help you on your journey, from planning visits to managing your advocacy organization.
RARE List
Search our directory of rare diseases for more information about a specific disease, related support organizations, news, events, and clinical trials.
Resource Hub
Visit the resource hub to download toolkits, watch webinars, and get information on important topics like gene-based diagnosis, financial advocacy, drug development, and more.
RARE Concierge
A free service for patients seeking information about a diagnosis, needing personalized support from our network of clinicians and researchers, or connection to support services.
COVID 19 Resources
Access a curated list of COVID 19 resources for rare patients and families for the global rare community.
