The Siegel Rare Neuroimmune Association has expanded its 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.
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.
Centers of Excellence
Johns Hopkins Myelopathy and Myelitis Center
Baltimore, Maryland
Carlos Pardo-Villamizar, MD
Kennedy Krieger Institute, International Center for Spinal Cord Injury
Baltimore, Maryland
Cristina Sadowsky, MD
University of Texas Southwestern Medical Center
Dallas, Texas
Benjamin Greenberg, MD, MHS
Children’s Medical Center
Dallas, Texas
Benjamin Greenberg, MD, MHS
The Children’s Hospital of Philadelphia
Philadelphia, Pennsylvania
Sarah Hopkins, MD, MSPH, Sona Narula, MD, and Amy Waldman, MD
University of Utah
Salt Lake City, Utah
Stacey L. Clardy, MD, PhD
Massachusetts General Hospital
Boston, Massachusetts
Michael Levy, MD, PhD
Children’s Hospital Colorado/University of Colorado
Aurora, Colorado
Teri Schreiner, MD, MPH
Boston Children’s Hospital
Boston, Massachusetts
Dr. Leslie Benson, Dr. Mark Gorman, Dr. Coral Stredny, and Dr. Margaret Wilson-Murphy
Emory University School of Medicine
Atlanta, Georgia
Dr. Grace Gombolay, Dr. Varun Kannan
Children’s Healthcare of Atlanta
Atlanta, Georgia
Dr. Grace Gombolay, Dr. Varun Kannan
Antwerp University Hospital
Edegem, Belgium
Dr. Barbara Willekens
Objectives
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 support through funding (when available through Board approval) for innovative, promising research ideas.
If you have any questions about the preparation of your application, please contact Krissy Dilger.
Benefits of Becoming a Center of Excellence
By becoming a part of CERND, your center will enjoy a range of benefits that contribute to both recognition and collaboration:
- Center of Excellence Recognition: Your center 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.
- Patient Resource Materials: Request and receive hard copies of patient resource materials directly from SRNA, ensuring valuable information is readily available to those you serve.
- Clinician Spotlight: Your center’s clinicians will have the opportunity to be featured in our educational initiatives. This includes participation in educational podcasts like Ask the Experts and Community Meets Care, as well as engagement in events like the Rare Neuroimmune Disorders Symposium.
- Research Funding Possibilities: You will have the chance to apply for research funding through SRNA. Additionally, you can seek designation as a James T. Lubin Fellowship site, opening up further avenues for support.
- CERND Designation Seal: A designated seal will be provided for use on your publications and website, signifying your center’s status as a recognized CERND.
By becoming a CERND, you enter a network that promotes excellence, collaboration, and growth within the realm of rare neuroimmune disorders.
Requirements to Become a Center of Excellence
- Provide high-quality, state-of-the-art, comprehensive clinical care to patients with ADEM, AFM, MOGAD, NMOSD, ON, and TM and other rare neuroimmune disorders. Clinic includes:
- Neurologists with neuroimmunology training
- Neuro-ophthalmologists
- Neuropsychologists and psychiatrists
- Neuroradiologists
- Occupational therapists
- Physiatrists
- Physical therapists
- Social workers
- Registered dietitians
- Urologists
- Comprehensive centers may also include orthopedic and/or rehabilitation specialists as part of their care team.
- Advance the research and understanding of these disorders through clinical research and/ or basic science research.
- Partner with the Siegel Rare Neuroimmune Association to create educational resources and programs for individuals diagnosed with rare neuroimmune disorders, their families and care partners, and medical professionals.
This program is sponsored in part by
All educational content and programs are solely developed by the SRNA staff, members of the scientific board and approved by Board of Directors.
