Advancements in Understanding Rare Neuroimmune Disorders
Earlier this year, SRNA announced a partnership with NeurologyLive as an expansion of our educational materials available for clinicians. Through this collaboration, we share insights and learn directly from clinician-scientists and leaders in the field. In a recent roundtable discussion together with NeurologyLive, a panel of experts in rare neuroimmune disorders delved into the major advances, limitations, and future research directions in this field.
Tracking Major Milestones of Rare Neuroimmune Disorders
The discussion began by tracing the evolution of SRNA, formerly known as the Transverse Myelitis Association. Sandy Siegel, SRNA president, shared the journey from the organization’s inception, beginning as an effort focused on transverse myelitis, to broader advocacy for a spectrum of rare neuroimmune disorders: “We began in 1994, a time when there were only three articles in the medical literature about transverse myelitis, indicating a lack of research.” In 2019, the organization transitioned to a new name the Siegel Rare Neuroimmune Disorder Association to better reflect its support for a wide range of disorders.
Underlying Pathology of Rare Neuroimmune Disorders
The panel highlighted significant milestones in understanding rare neuroimmune disorders. Dr. Benjamin Greenberg discussed the remarkable scientific progress made in the past two decades: “When I joined Doug and Sandy, I was just finishing my neurology residency and starting my fellowship. Two aspects drew me to this field: the remarkable scientific advancements within the community and the integration of science and clinical care.” The panel stressed the importance of early and aggressive treatment and the need for more precise immune modulators.
Complexities with Management and Treatment of Neuroimmune Disorders
The discussion turned to the challenges of rehabilitation and symptom management in rare neuroimmune disorders. Dr. Greenberg highlighted the need to focus on restoring function for patients with idiopathic myelitis. Sandy Siegel emphasized the common issue of overlapping symptoms, such as bowel and bladder dysfunction, fatigue, depression, and neuropathic pain.
Need for Improving Epidemiologic Triggers of Rare Neuroimmune Disorders
Looking ahead, the panel discussed the research landscape. Dr. Greenberg outlined two critical areas for future research. First, the focus should be on restoring function, with an emphasis on rehabilitation and therapies to improve overall function. Second, biomarkers for remission are needed to determine the necessity of lifelong immunosuppressive medication more accurately.
Research Priorities for Advancing Care of Neuroimmune Disorders
In the final part of the discussion, the panel explored the impact of advocacy organizations like SRNA on the patient-physician experience and the quality of life for people diagnosed with rare neuroimmune disorders. Dr. Kerr emphasized that SRNA serves as a lifeline for newly diagnosed patients: “SRNA serves as a lifeline for individuals newly diagnosed with these disorders worldwide. When someone receives a daunting diagnosis, they often turn to SRNA as their first point of contact. They find reassurance, guidance, and a voice that says, ‘You’re not alone, and here’s what you can do.’ SRNA essentially acts as air traffic control during those critical early weeks, directing people where they need to go. Beyond this initial support, SRNA provides a community and ongoing resources throughout the journey, creating an environment where physicians are motivated to participate. They witness the dynamic relationships between patients, families, advocacy groups, and physicians. It embodies the essence of why many of us entered the medical field—to make a difference in people’s lives. SRNA has made all of this possible.”
This is a glimpse into the valuable insights shared during the roundtable discussion on rare neuroimmune disorders, underscoring the progress made in understanding these disorders, the challenges that remain, and the critical role of advocacy organizations in supporting patients and driving research forward. Find the full series, including videos and transcripts, here.
