Program areas at NORD
Patient assistance programs provide financial assistance to help eligible patients access lifesaving therapies and services prescribed by their physicians. In 2022 nord provided financial assistance to 5,472 people with Rare diseases. In addition, nord works with organizations conducting clinical trials of new treatments in arranging for patients with Rare diseases and family members to travel to the sites where the trials are being conducted. In 2022, there were 139 patients that nord assisted as part of that special clinical trial travel assistance program.
In 2022, nord has continued to develop its natural history/registryplatform to help researchers better understand the patient experienceand promote development of innovative, safe and effective therapies. Asof december 31, 2022, there were 13,857 participants across 30registries.
Nord's advocacy efforts are focused on serving as a liaison between therare disease community and the various organizations and institutionsthat have a direct impact on the lives of the 30 million americansliving 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.
Nord's educational initiatives strive to empower patients and their families, inform and educate students across disciplines from high school through graduate school, and support the vitally important work of physicians and other healthcare professionals in improving the recognition of symptoms of Rare disease and early, accurate diagnosis as well as improving clinician knowledge and competence in treating Rare diseases. This is done through the development of nord's Rare disease database, the delivery of Rare disease videos and webinars, and through robust educational programming with nord's cme program and at the living Rare, living stronger nord patient and family forum and the nord Rare diseases and orphan products summit. In 2022, 755 people attended the nord summit in person, and 38 people registered for virtual streaming of the meeting. Also, in 2022, there were over 51 million visitors to nord's Rare disease database.
As the leading Rare disease umbrella Organization in the united states, the National Organization for Rare Disorders provides our member organizations with high-touch support in advocacy, educations, research, professional development and communications. Our programs and services offer all of the tools organizational leaders and members need to stay connected and up-to-date on critical information while launching, growing and evolving their organizations. As of december 2022, nord had 341 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 2022, there were 31 designated nord Rare disease centers of excellence.