RSU Center of Excellence Network

ReNU Syndrome United (RSU) is building a global Center of Excellence Network to connect patient families with exceptional medical coordination and deep expertise in ReNU syndrome and related RNUopathy neurodevelopmental disorders (NDDs). Designated RSU Centers of Excellence provide ReNU patients with a best-in-class multidisciplinary clinical care team, are dedicated to collaboratively expanding clinical knowledge of the disorder, and are committed to advancing research, trials, and treatment while supporting the rapidly growing global ReNU syndrome community.

Contact united@renusyndrome.org for more information.

Achieving a RSU Center of Excellence designation:

  • Designated Clinic Personnel

    Clinical Lead - Physician who directs diagnostic and treatment services for ReNU patients with demonstrated expertise in the medical management of ReNU Syndrome; collaborates with others and RSU to promote clinical knowledge

    Center Coordinator - primary point of patient contact; enters patient data into the ReNU Syndrome United Registry/Natural History platform following each visit 

  • Multidisciplinary Care Team

    Provide a multidisciplinary care team with expertise in treating ReNU syndrome symptoms & medical needs; see the ReNU Syndrome Support Tool for a list of related specialties

    Dedication to treating ReNU patients throughout their lifespan and help patients navigate the transition from pediatric to adult care

  • Clinical Research & Trials

    Planned or demonstrated involvement in clinical research and trials for ReNUSyndrome; committed to sharing knowledge of new treatments and research with patients and RSU

  • RSU Community Support

    Clinical Lead commits to attend RSU Conferences and Scientific Symposiums; COE representatives participate in RSU-sponsored educational programming, events and meetings