Through its extensive online resources, meetings and conferences, NORD helps patients and their families learn about rare diseases, access helpful resources and become empowered partners with their medical providers. NORD’s educational resources for patients and their families include:
The Rare Disease Database provides reports on more than 1,300 rare diseases for patients and their families. Each report also links to disease-specific patient organizations and other resources that provide further support for patients and their families.
Visitors to the NORD website may search the Organizational Database to see whether there is an organization for patients with their disease. These organizations can provide support for patients and families who are living with rare disease. If there is no organization available for a specific disease, patients and families can work with Rare Launch, a program that helps to start patient organizations.
NORD hosts regional disease-specific meetings for patients and family members to promote connection, sharing of experiences and learning from rare disease medical experts. Patients have said that attending patient meets has been critical for them to be able to educate others
As the primary umbrella organization for the 30 million Americans living with rare diseases, NORD helps patients connect with others through our social media and special initiatives such as Rare Disease Day, for which NORD is the official U.S. sponsor. Follow NORD on Facebook and Twitter, and visit the RareDiseaseDay.US website to connect with others and get involved.