NATIONAL ORGANIZATION FOR RARE

In 2024, nord continued to develop the iamrare natural history/registry platform and program to help researchers better understand the patient experience and promote the development of innovative, safe, and effective therapies. New iamrare platform features added this year included enhancements to the user experience and support for additional languages (spanish and french). As of 12-31-2024, there were 17,591 consented participants across 44 registries representing more than 140 rare diseases. In addition, as of 12-31-2024, the research team was supporting the development of 30 new rare disease registries.

Nord's advocacy efforts are focused on serving as a liaison between the rare disease community and the various organizations and institutions that have a direct impact on the lives of the 30 million americans living with rare diseases. Nord engages all types of organziations, including state and federal agencies and legislators, other non-profit organizations, and for-profit organizations to help raise awareness around the needs of rare disease patients and to collectively contribute to realizing solutions that can positively impact the diverse rare disease community.

As the leading rare disease umbrella organization in the united states, the national organization for rare disorders provides its member organizations with comprehensive support in advocacy, education, research, professional development, organizational leadership, and communications. Through our programs and services, we equip organizational leaders and members with the essential tools and resources needed to stay informed, connected, and empowered as they establish, grow, and strengthen their organizations. As of december 2024, nord proudly supported 356 member patient organizations.

The nord rare disease centers of excellence program was established to select and to collaborate with a network of us medical institutions with exceptional clinical and research programs for patients with rare diseases, who will work collaboratively with nord, with one another, and with their local communities of physicians, caregivers, and patients to share expert knowledge, define standards of practice for rare diseases, accelerate diagnosis, and improve patient care, treatment, and research in rare diseases. As of december 2024, there were 40 designated nord rare disease centers of excellence.