In the early years, NORD’s Information Services team provided white glove support by responding on an individual basis to requests for assistance and support from both individuals and organizations across the country. The solutions ranged from simple to complex and could require NORD to draw upon its contacts in the government, (most often within HHS or Congress), or the medical and scientific communities. The demonstrable success of the ODA along with significant advancements in science and technology have had a positive impact on the needs of the community and NORD has evolved its support services and capacity building activities to meet current and future needs of the community.
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Today, NORD provides a majority of its capacity building activities under a program called Rare Launch™. Given the complex nature of rare disease treatment development and informed by NORD’s longstanding advocacy experience, the Rare Launch™ program is designed to be comprehensive and address various dimensions of capacity building within the field of rare disease patient advocacy. As an umbrella organization for the rare disease community, NORD approaches each engagement on a disease specific initiative with an eye toward identifying best practices that can be scaled and applied across the community where applicable.
The resources below have been developed through the years under our Membership and Research Departments in order to support our Member Organizations and the communities of patients and caregivers seeking to start nonprofits.