Announcing the Center of Excellence in Rare Neuroimmune Disorders Designation
By Amanda Fortune
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. A CERND designation indicates that these institutions are committed to advancing the research and understanding of rare neuroimmune disorders, providing high-quality comprehensive clinical care to their patients, and providing and connecting patients, their families, and healthcare professionals with educational resources and programs.
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 to create educational resources and programs for individuals diagnosed with rare neuroimmune disorders, their families and care partners, and medical professionals.
Centers that receive a CERND designation enjoy a wide range of benefits including both recognition and collaboration. Patient resource materials directly from SRNA can be requested by these centers, ensuring that their patients have valuable information readily available. The center’s clinicians also have the opportunity to be featured in SRNA’s educational initiatives, such as podcasts like “Ask the Expert” and “Community Meets Care” as well as engagement in events like the Rare Neuroimmune Disorder Symposium. Additionally, centers of excellence have the chance to apply for research funding through SRNA and can seek designation as a James T. Lubin Fellowship site which supports post-residency training of clinicians committed to careers in academic medicine specializing in rare neuroimmune disorders. Lastly, centers of excellence will receive a CERND Designation Seal for use on their publications and website, signifying the center’s status as a recognized CERND.
Individuals living with a rare neuroimmune disorder can search for a Center of Excellence, or a medical professional at one of these centers, by visiting our Medical Professional Network and selecting the Center of Excellence Rare Neuroimmune Disorders (CERND) filter. By choosing a CERND, our community members will be able to trust that they are receiving care from experts in the field of neuroimmunology.
You can learn more about the SRNA Center of Excellence designation on our website here.
