Children's National Rare Disease Institute

In pursuing our patient-centered purpose, the Retrophin Rare Disease Network at Children's National Health System in Washington, DC was created through a multi-year financial commitment to support the work of the Children's National Rare Disease Institute (CNRDI).

The innovative, global "hub and spoke" model utilized by the Retrophin Rare Disease Network aims to improve patient access, standardize care models, and establish worldwide best practices in the diagnosis and treatment of rare diseases.

CNRDI is a first-of-its-kind center focused exclusively on advancing the care and treatment of children and adults with rare genetic diseases. It is the first National Organization for Rare Disorders (NORD)-designated Center of Excellence, and provides a medical home for patients and families seeking the most advanced care and expertise for rare genetic conditions that remain largely unknown to the general medical community.