2021 Rare Neuroimmune Disorders Symposium Recap
The 2021 SRNA Rare Neuroimmune Disorders Symposium (RNDS) was held virtually on October 8 – 10. This one-of-a-kind, biennial event was created to connect individuals diagnosed with rare neuroimmune disorders with the clinicians and researchers who study and treat these conditions. This year’s successful symposium featured 42 expert speakers and was attended by nearly 200 individuals.
Hosts for the 2021 RNDS were SRNA, Massachusetts General Hospital, UT Southwestern Medical Center, Johns Hopkins Medicine, Harvard Medical School, Children’s Health Dallas, Johns Hopkins Myelitis and Myelopathy Center, MGH NMO Clinic and Research Laboratory, and the CONQUER Program.
The conference opened with an introduction by keynote speaker, SRNA President, Sandy Siegel. In his talk, Sandy stressed the importance of education and the evolving nature of research on neuroimmune disorders. He reaffirmed our commitment to hosting a symposium that empowers our community to advocate for themselves and provides valuable information resources about rare neuroimmune disorders.
Three tracks were offered on the first day of the conference so that attendees could tailor their program to meet their needs. Track 1 was offered for those who were newly diagnosed with rare neuroimmune disorders; Track 2 was for those diagnosed over two years ago; and Track 3 was for parents and caregivers of children diagnosed with a disorder. You can view the presentations from Day 1 here.
The second day of the RNDS focused on learning strategies and solutions to manage the ongoing symptoms of ADEM, AFM, MOGAD, NMOSD, ON, and TM. The day began with a presentation by Dr. Ram Narayan who discussed the multiple mechanisms that can cause neuropathic pain, as well as methods for managing this very distressing symptom. All presentations from Day 2 can be viewed here.
Research was our focus on the last day of RNDS. Activities for the day commenced with a CDC AFM Biorepository and Moderated Roundtable on AFM Research. The distinguished panelists discussed current studies and stressed the importance of participating in research to provide better outcomes for future cases. You can view this roundtable discussion and all videos from Day 3 here.
Although this was a virtual conference, attendees had many opportunities to connect with one another by using a “Networking” feature. When networking, participants were matched for brief, one-on-one meetings with a series of conference attendees. This feature was very positively received by those who attended the RNDS, and many new connections were made.
We would like to extend our sincere thanks to all who joined us for the 2021 RNDS. We are incredibly grateful to all our community members who attended the event and to our distinguished speakers who shared both their time and expertise.
The support of our generous RNDS sponsors Alexion – AstraZeneca Rare Disease, Genentech, and Horizon Therapeutics is sincerely appreciated. Many thanks are also owed to our wonderful non-profit partners for this event: The Sumaira Foundation for NMO, The Guthy-Jackson Charitable Foundation, The MOG Project, The Cody Unser First Step Foundation, the Acute Flaccid Myelitis Association, and the Connor B. Judge Foundation.
We look forward to seeing you at the next RNDS symposium!