The Siegel Rare Neuroimmune Association (SRNA) is a not-for-profit organization dedicated to the support of children, adolescents, and adults with a spectrum of rare neuroimmune disorders including: Acute Disseminated Encephalomyelitis (ADEM), Acute Flaccid Myelitis (AFM), MOG Antibody Disease (MOGAD), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON) and Transverse Myelitis (TM). We support individuals living with rare neuroimmune diagnoses and their families, promote awareness to empower patients, families, clinicians and scientists, build a collaborative and dedicated clinical care network and help advance scientific understanding and research.
Additional Resources:
Acute Flaccid Myelitis (AFM) Physician and Consult Support Portal
Acute Flaccid Myelitis (AFM) Resources for Families and Clinicians
Research Priorities for Advancing Care of Neuroimmune Disorders
September 16th 2023Sanford Siegel, Douglas Kerr, MD; and Benjamin Greenberg, MD, detailed the need for greater research on treatment strategies that repair myelin improve neurodegeneration, as well as expanded knowledge on how neuroimmune disorders present. [WATCH TIME: 5 minutes]
Need for Improving Epidemiologic Triggers of Rare Neuroimmune Disorders
September 15th 2023Benjamin Greenberg, MD; Douglas Kerr, MD; and Sanford Siegel provided perspectives on the gaps in the epidemiology and treatment paradigm for patients with rare neuroimmune disorders. [WATCH TIME: 3 minutes]
Complexities With Management and Treatment of Neuroimmune Disorders
September 14th 2023An expert neurology panel detailed some of the changes in therapeutic strategies and approaches to treating rare neuroimmune disorders, including the steps taken during the acute phase. [WATCH TIME: 6 minutes]
Significance of New MOGAD Diagnosis Criteria, Inclusion of MOG-IgG: Anastasia Vishnevetsky, MD
April 19th 2023An immunology fellow at Brigham and Women’s Hospital provided perspective on the positive impacts a new diagnostic criterion for MOGAD brings to the clinical community. [WATCH TIME: 4 minutes]
Timing of Treatment and Managing Attacks in MOGAD: Anastasia Vishnevetsky, MD
April 10th 2023The immunology fellow at Brigham and Women’s Hospital discussed the current state of care for patients with MOGAD, and whether treatment decisions differ based on timing of attacks. [WATCH TIME: 7 minutes]
Building a Greater Understanding for NMOSD Treatments, Neurodegeneration: John Chen, MD, PhD
April 5th 2023The neuroophtalmologist at Mayo Clinic detailed improvements in prescribing methods for NMOSD treatments and the conversations surrounding reversing neurodegeneration. [WATCH TIME: 3 minutes]
Acute Flaccid Myelitis: Drawing Attention Amid the Peak Months
September 6th 2022Olwen C. Murphy, MBBCh, and Matthew R. Vogt, MD, PhD, discussed the current clinical understanding of AFM and the need to recognize this condition amid the “peak” months of infection: August, September, and October.