Edward Neilan, MD, PhD, Chief Scientific and Medical Officer at the National Organization for Rare Disorders (NORD), discusses how the NORD Rare Disease Centers of Excellence has already identified 11 potential working groups that could tackle unmet needs within the rare disease community.

As Dr. Neilan says, he recently had a discussion with the center directors of all 31 NORD Rare Disease Centers of Excellence about what they viewed as the main unmet needs in the rare disease communities impeding optimal diagnosis and care of patients. From this discussion, 11 potential working groups were identified and center directors are currently working to develop these groups with staff at their center. Some issues that these working groups will tackle are the long diagnostic journey for most rare diseases, and the issue of telemedicine, which is often very convenient for both physicians and patients but insurance complications and state health legislature can make telemedicine difficult to offer.

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