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NORD’s Rare Disease Centers of Excellence – FAQs

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 disease will better navigate their diagnostic journey and find qualified medical homes for ongoing treatment and care.

About NORD

The National Organization for Rare Disorders (NORD) is improving the lives of rare disease patients and their families – today and into the future- to ensure they have greater access to healthcare services, research, treatments, and cures. Founded in 1983 by parent advocates after the successful passage of the Orphan Drug Act, NORD has led the rare disease community in developing innovative policies and programs to address the complex issues and needs of patients. We believe that all patients with a rare disease have a fundamental right to their best health and well-being.

You can learn more about NORD, its membership and partnerships, by visiting rarediseases.org.

About the NORD CoE Program

The NORD Centers of Excellence Program (NORD CoE) 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 disease 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.

Designations

NORD, along with a broad panel of clinical experts from leading medical institutions, has identified criteria that affirms 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. Contributing to rare disease research

Centers will be eligible to receive one of two designations: National or Regional. Applicants will be considered and designated based criteria that affirms 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 care in geographic areas where access is challenging.

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

Joint Applications

Applicants can pool together to share a designation so long as the group meets the criteria for regional or national designation and can show how patients will be supported in navigating care throughout the participating centers. Only one application is required for the group, but each participating center will need to provide letters of support from senior leadership acknowledging their role in upholding the designation.

Application Timeline and Process

The online application portal will be open through June 25th. Only completed applications will be shared with the review committee for consideration.

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.

Benefits of Applying

In addition to being recognized by key opinion leaders as a NORD Rare Disease Center of Excellence, participating centers will be highly visible through promotion on NORD’s website (rarediseases.org). As the leading platform for patients, caregivers, and families world-wide, our website services nearly 2 million people per month in addition to fielding calls from more than 170,000 families through our call center each year. NORD is often one of the first places people land when seeking information on a rare disease or trying to find medical experts, active research, available treatments and resources as they navigate their or a loved one’s diagnosis.

Centers will receive promotional support in sharing clinical and research advancements made in the field of rare disease through NORD’s online channels (reach detailed below), as well as opportunities to present at one of NORD’s premier conferences. The Rare Diseases and Orphan Products Breakthrough Summit attracts over 1,000 attendees including patients, patient organizations, FDA, NIH, industry, investors, and more than a dozen media partners.

Our Living Rare, Living Stronger Patient and Family Forum brings together hundreds of patients and caregivers each year from around the country to connect and learn practical guidance for navigating their rare disease diagnosis, as well as having opportunities to learn about local academic medical centers.

Through promotion of NORD’s designated centers on our website, and with our 330 disease-specific patient organization members, we believe that this program will help many patients find a safe medical home.

Participating centers will also be able to nominate personnel to serve on a steering committee with representatives from the network, NORD, and the broader advocacy community. This group will work on the establishment of the cooperative networks, the development of network-led projects, and the evolution of the program.

Contact for Questions

NORD is happy to provide additional information and answers to questions not covered in this document. Please contact Lisa Sarfaty, Director of Strategic Planning, to schedule a meeting with our team at [email protected]