NORD’s policy team works with policy makers on Capitol Hill, in the White House, in government agencies, and at the local level to help inform policies that are reflective of the needs of rare disease patients. Since 1983, NORD has ensured that the rare disease perspective is at the table when important decisions are made. You can join NORD in advocacy on national issues and, through our Rare Action Network, on state-level issues.

Disease-specific patient organizations are crucial partners in our mission to serve rare disease patients and their families. We provide capacity building and mentorship services to start-up and established organizations through one-on-one guidance, webinars, in-person meetings, and toolkits to help them establish, strengthen and grow.

NORD provides information about rare diseases, patient organizations and other resources for patients and families. We also promote awareness of rare diseases among physicians and other medical professionals.

Research gives hope to rare disease patients and their families. Since 1989, NORD has administered a Research Program through which we provide grants that have resulted in numerous published advances and at least two FDA-approved therapies.  NORD is also working with rare disease organizations to launch disease-specific registries to support research.

NORD pioneered Patient Assistance Programs in 1987 and we are the leader in patient-focused PAPs today. NORD programs include free drug, co-pay and premium assistance, travel/lodging assistance for clinical trials, and expanded or emergency access.

Recognizing that rare diseases are a global public health challenge, NORD has strategic partnerships with international umbrella organizations, such as the European Organization for Rare Diseases (EURORDIS) and the Japanese Patient Association (JPA). NORD represents the U.S. on both Rare Diseases International (RDI) and Rare Disease Day steering committees.