Announcing the Center of Excellence in Rare Neuroimmune Disorders Designation!

The Siegel Rare Neuroimmune Association is excited to announce that we are expanding our Center of Excellence in Rare Neuroimmune Disorders (CERND) designation to more institutions that offer comprehensive care to individuals diagnosed with ADEM, AFM, MOGAD, NMOSD, ON, and TM. Institutions can now apply to become a CERND.

SRNA’s research efforts began with pivotal funding support for research staff and clinicians at the first center, The Johns Hopkins Transverse Myelitis Center under the direction of Dr. Douglas A. Kerr at Johns Hopkins University in 2001. Our initial support of the Johns Hopkins TM Center enabled the first systematic collection of information about TM in both adults and children. For many years, there were two SRNA-designated Centers of Excellence in rare neuroimmune disorders. Under the leadership of Dr. Carlos Pardo, there is a Center at Johns Hopkins University School of Medicine in Baltimore, MD, and under the direction of Dr. Benjamin Greenberg, there is a Center at the University of Texas Southwestern in Dallas, TX. SRNA has now expanded to include additional Centers of Excellence, including Children’s Medical Center, Dallas, The Children’s Hospital of Philadelphia, University of Utah, Massachusetts General Hospital, Children’s Hospital Colorado/University of Colorado, and Boston Children’s Hospital.

SRNA’s goal is to establish additional Centers of Excellence focused on providing clinical care, advancing research to better understand rare neuroimmune disorders, and developing more effective acute therapies and symptom management strategies. It is our intent to partner with the clinicians at the Centers of Excellence and fund (when available through Board approval) innovative, promising research ideas.

Centers that receive a CERND designation will enjoy a range of benefits that include both recognition and collaboration. Centers will be listed on our website, publications, and materials as a Center of Excellence. This recognition extends to being featured within SRNA’s Medical Professional Network. Centers can also request and receive hard copies of patient resource materials directly from SRNA, ensuring valuable information is readily available to patients and their care partners. Additionally, clinicians from CERNDs will have the opportunity to be featured in our educational initiatives. This includes participation in educational podcasts like Ask the Expert and Community Meets Care, as well as engagement in events like the Rare Neuroimmune Disorders Symposium. Each center will also have the chance to apply for research funding through SRNA and can seek designation as a James T. Lubin Fellowship site, opening up further avenues for support. Finally, a designated seal will be provided for use on each center’s publications and website, signifying the center’s status as a recognized CERND.

To review the requirements and apply for your center to become a CERND, please click here. By becoming a CERND, your center will enter a network that promotes excellence, collaboration, and growth within the realm of rare neuroimmune disorders.