Partnering Together to Expand Education for Clinicians

The diagnostic journey for people with rare neuroimmune disorders can be a confusing and overwhelming process. Some receive a diagnosis days after their symptoms first present, while others may wait years for an accurate diagnosis. The neuroimmune disorders we advocate for remain a challenge to diagnose, with only two of the disorders (NMOSD and MOGAD) having distinct and defined biomarker-based blood tests. 

A diagnosis is a process that requires early recognition of symptoms so clinicians can quickly start therapy to improve the course of the disorder for a patient and greatly reduce disease progression and disability. “In your own words” is a series on the SRNA blog written by community members, highlighting the range of stories and experiences for people diagnosed and their loved ones. Learn about the path to diagnosis for Prerna with ADEM, Leah with AFM, Luke with MOGAD, Ireland with NMOSD, and Daniel with TM.

At SRNA, we aim to educate those diagnosed with rare neuroimmune disorders, their loved ones, and the medical professionals who care for our community and develop resources to expand access to knowledge and care of rare neuroimmune disorders. One way we do this is by supporting and educating neurologists and other healthcare professionals in the field. The James T. Lubin Clinician Scientist Fellowship Award was established in 2008 to support clinical care and research training to provide high quality comprehensive clinical care, advance research, and develop future leaders in the rare neuroimmune disorders clinical community. Continuing medical education is available through the Certification Exam in Rare Neuroimmune Disorders. We also help setup peer-to-peer support for physicians with the AFM Physician Consult and Support Portal

We are excited to expand our education and professional development efforts for clinicians through a partnership with NeurologyLive. Through a strategic alliance partnership with NeurologyLive and HCP Live platforms, we can work together to identify and develop content on their multi-channel platform focused on educating and informing general neurologists and HCPs treating neurological diseases about rare neuroimmune disorders. Through this collaboration, we can share and learn from insights directly from clinician-scientists and leaders in the field. 

Together, we have brought a series of podcasts, videos, and articles to medical professionals in a library that will continue to grow. Below are some of the resources that have come from our partnership so far:

  • Acute Flaccid Myelitis (AFM) was highlighted in the Mind Moments® podcast with an exclusive interview with a discussion on the latest research and disease management strategies related to AFM. Learn more
  • Olwen C. Murphy, MBBCh, and Matthew R. Vogt, MD, PhD, discussed the current clinical understanding of Acute Flaccid Myelitis (AFM) and the need to recognize this condition amid the “peak” months of infection. Learn more.
  • Carlos A. Pardo-Villamizar, MD, provided an in-depth look at the 2022 Rare Neuroimmune Disorders Symposium (RNDS) and highlighted the patient-centric theme of the event. Learn more
  • Rebecca Whitney, SRNA Associate Director of Programs and Community Support, wrote an article with an inside look at the 2022 RNDS. Learn More
  • Experts including Brenda Banwell, MD; Sean Pittock, MD; and Michael Levy, MD, PhD, covered topics including diagnosis, presentation, and treatment decision differences in an SRNA Roundtable Discussion. Learn more.