Institutional Application Submission For NORD RD CoE Designation Is Currently Closed

Each of the designated NORD RD CoE sites was selected because it has an extensive array of experts covering all medical specialties required for the diagnosis and treatment of a broad range of rare diseases for both children and adults and has demonstrated a strong commitment to supporting all stages of rare disease research, with the goals of increasing our knowledge of disease etiology and pathophysiology, improving diagnostic techniques, and developing rare disease treatments and cures. In addition to dedication to increasing research and care, each Director/Co-Director and NORD RD CoE site is also dedicated to mentoring the next generation of rare disease clinicians/researchers and views the NORD RD CoE network as a powerful mechanism to engage and train fellows and junior faculty early in their careers.

Yes, all institutions applying to become a NORD RD CoE must be based in the United States. We are aware that there are other international efforts that support each country or region setting up their own network with the hopes of interconnecting the country/regional networks globally and we wish to support these efforts.

The majority of the application sought to confirm whether or not the applicant Center has certain medical programs/services (e.g., adult and pediatric emergency rooms, dialysis, etc.), facilities & lab services, patient supportive services, adult specialists, and pediatric services important to rare disease patients. There were about 10 essay questions that allow applicants to highlight specific rare disease diagnostic and medical care services, rare disease focused research and collaborations, and education and training programs to build the next generation of rare disease specialists. Since all rare diseases are not genetic, applicants were expected to highlight rare disease programs or capabilities in other specialties (e.g., neurology, rheumatology, infectious disease, oncology).

Pediatric medical institutes were required to submit a joint application (a joint multisite application) with a similarly located medical institution serving adults (or serving both children and adults). More than two institutions were allowed to be part of a joint application. Similarly, a specialized institution, for example one focused on cancer or neurological diseases, was required to submit a joint application with a medical institution that served a broader range of rare diseases.

There is not a cap to the number of designated NORD RD CoE sites, but the standard is high, including a demonstrated commitment to high quality care for rare diseases, broad and deep medical expertise in multiple fields, and involvement in both rare disease research and training the next generation of rare disease experts.

NORD CoE will be required to recertify every 3 years. The process will include recertifying the information from their original application and provide any updates or new information, capabilities, or changes to their program. Recertification is not guaranteed, but we anticipate working through any issues that a Center may experience as the issues occur to support all those Centers in the Program to continue to meet the designation criteria.

We plan to open a rolling application process some time in the future, but are currently focused on strengthening our Network.