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NORD’s Rare Disease Centers of Excellence


Overview/About

The NORD CoE Program is the first-ever designation dedicated to all rare diseases and the patients impacted by them. The goal of the program is to define standards for high-quality specialized care that will be made available through participating centers. Through improved access to clinical experts and cutting-edge facilities; patients with rare diseases will better navigate their diagnostic journey and find qualified medical homes for ongoing treatment and care.

The centers that form the NORD CoE network will collaborate to share knowledge, define standards and protocols, and help to shape the field of rare disease and the education around it.

What is required to become a designated NORD CoE?

NORD, along with a broad panel of clinical experts from leading medical institutions, has identified criteria that affirm excellence and commitment through:

  1. Provision of high-quality care and support to rare disease patients and their families
  2. Coordinated, multi-specialty care
  3. Front-line facilities and technology
  4. Adequate provisions and arrangements to transition pediatric patients to adult care services
  5. Commitment to providing and improving the education and training of students and medical professionals in the field of rare disease
  6. Contribution to innovative modes of therapy and care

Through a weighted scoring process, eligible institutions can receive either a Regional or National designation. Applicants will be considered and designated based on criteria that affirm the availability of facilities and personnel that enable a participating National Center to diagnose and treat patients across the broad spectrum of rare diseases. Regional Centers will need to show expertise within the field of rare disease while also providing services in geographic areas with limited access to specialized care.

More information about the application questions can be found in the NORD CoE Application Overview document.

Application window/timeframe

The application portal will close at midnight on June 30th. Only completed applications will be sent to NORD’s review committee.

The application form is the first portion of the CoE designation application process. Written applications will undergo initial screening and review. Applications that pass the initial review will be invited to participate in an online interview with NORD’s review committee.

If you have questions about the application process, please contact [email protected]

Learn More About Applying

NORD will be hosting a private webinar with prospective centers to discuss and answer questions about this new distinction and the application process.

  • Webinar Date & Time: May 28th at 12:00 PM EST
  • Duration: 1 Hour
  • Register to Attend: Using this link.