NATIONAL ORGANIZATION FOR RARE DISORDERS INC

Programs

1. Nord's patient assistance programs provide eligible individuals with financial assistance to support the broad range of care and treatment needs associated with managing a rare disease. Each disease-specific program is designed to address the nuances of the individual condition and the unique needs of its patient community. Assistance may include support for health insurance premiums, copayments, and coinsurance, as well as certain covered out-of-pocket medical expenses. Nord's approach ensures that eligible individuals, whether commercially insured, publicly insured, underinsured, or uninsured, receive the financial support necessary to access the care and treatment prescribed by their health care provider(s). In 2025, nord's patient assistance programs provided financial assistance to 6,880 individuals, including 6,602 individuals supported through our pap and 278 individuals who received travel and lodging assistance to participate in clinical trials.

   $25,200,680 spentof which $22,081,890 as grants$4,936,057 earned by the program
   77% of program spending

2. 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 of more than 1,480 comprehensive expert-written reports on specific rare disorders, the delivery of rare disease videos and webinars, and through robust educational programming with nord's cme program and at the nord rare diseases and orphan products breakthrough summit. In 2025, 759 people attended the nord summit in person, and 60 people registered to attend virtually. Also, in 2025, there were over 15 million visitors to nord's rare disease database.

   $1,921,195 spent$2,046,711 earned by the program
   6% of program spending

3. In 2025, nord continued to advance the iamrare natural history and registry platform to strengthen rare disease research and improve the patient experience in support of therapeutic development. Major platform enhancements included the launch of a redesigned ui to streamline navigation and improve cross-browser consistency, and the release of the iamrare mobile app with features such as push notifications for survey reminders and device-level accessibility controls. As of december 2025, there were 22,142 consented participants across 51 registries. In addition, during 2025, 10 new rare disease registries were launched, representing the largest number initiated in a single year, and the research team was supporting the development of 24 additional registries.

   $3,000,676 spent$952,549 earned by the program
   9% of program spending

4. The national organization for rare disorders engages in advocacy efforts that serve as a liaison between the rare disease community and the organizations and institutions that have a direct impact on the lives of the approximately 30 million americans living with rare diseases. Nord works with a wide range of stakeholders, including state and federal agencies and legislators, nonprofit organizations, and private sector partners to raise awareness of the needs of rare disease patients and to advance policies and initiatives that improve care, treatment, and support for the rare disease community.

   $1,085,277 spent
   3% of program spending

5. The national organization for rare disorders is the leading rare disease umbrella organization in the united states, providing its member organizations with support in advocacy, education, research, professional development, organizational leadership, and communications. Through these programs and services, nord equips leaders of patient organizations with the tools and resources needed to remain informed, connected, and effective as they establish, grow, and strengthen their organizations. As of december 2025, nord supported 360 member patient organizations.

   $649,212 spent
   2% of program spending

6. The nord rare disease centers of excellence program identifies and collaborates with a network of u.s. Medical institutions that have exceptional clinical and research programs serving patients with rare diseases. These institutions work in partnership 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. Through this collaborative network, the program helps advance best practices and improve outcomes for individuals living with rare diseases. As of december 2025, there were 46 designated rare disease centers of excellence.

   $920,169 spent
   3% of program spending

The 6 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $32,777,209.