The 2020 Rare Neuroimmune Disorders Symposium (RNDS) took place on August 29, 2020. While the event was originally scheduled to take place in Salt Lake City, we partnered with our co-host, University of Utah Health, to adapt the program to a virtual platform due to the COVID-19 pandemic. The virtual element of the event allowed for participants to join from countries across the world without the difficulty and expense of travel. Participants from Australia, England, Canada, Austria, France, Germany, India, Ireland, Kenya, the Netherlands, Norway, Pakistan, Poland, Portugal, Qatar, Serbia, Singapore, Spain, Sweden, Turkmenistan, the United States, Venezuela, and Vietnam registered to attend. All the presentations are recorded and available to view on our website in the 2020 RNDS Resource Center.
The RNDS focused on 5 key things:
2) symptom management
4) treatment for recurrent disorders
5) connecting with members of our community
To cover questions about diagnosis, five talks, one about each disorder, were given, and these talks discussed the symptoms, diagnostic criteria, and acute treatments for each disorder. There were many questions about both the aquaporin-4 and MOG antibodies, how to determine if one is having a relapse, the differences between each of the disorders, and how to determine the correct diagnosis. There were also many questions about how to manage symptoms, such as spasticity, bladder and bowel dysfunction, pain, and visual issues. The COVID-19 pandemic was discussed, as participants had questions about the vaccines that were in development at that time (none had yet received emergency use authorization as of August 2020), as well as whether the virus (SARS-CoV-2) that causes COVID-19 could trigger an initial attack of TM or ADEM or a relapse in NMOSD or MOGAD. Participants also had questions about whether they are at risk for severe COVID due to their rare neuroimmune disorder. Treatments for recurrent disorders like NMOSD and MOGAD and recurrent TM were also discussed in-depth. This included the three newly approved drugs for NMOSD. Even though we couldn’t meet in-person, the platform we used for the RNDS (Hopin) allowed for one-to-one conversations through a networking feature. Furthermore, the chat was very active, allowing those in attendance to connect with each other as well as with medical professionals specializing in these disorders.
As we plan the agenda for our 2021 Virtual RNDS, we would be so grateful if you could fill out this survey to share your thoughts and help us plan the program. We hope we can meet in-person again in 2022.
We look forward to seeing you later this year!