SRNA COVID-19 Resources

Though nearly two years have passed since the start of the COVID-19 pandemic, there are still many unanswered questions regarding the virus and how it affects the rare neuroimmune disorder community. Because of this, we have gathered information and resources to help you navigate these challenging times. Please read the information below carefully to know and understand the risks associated with this virus for those diagnosed with a rare neuroimmune disorder.

Risk Factors

Risk factors associated with COVID-19 may vary significantly for each individual diagnosed with a rare neuroimmune disorder (ADEM, AFM, MOGAD, NMOSD, ON, and TM). Although many who live with these diagnoses are healthy individuals, some may have compromised or suppressed immune systems, respiratory concerns, or other factors that make them more susceptible to infection and illness. Each individual and family should know their risks and take appropriate precautions. Any questions or concerns should be addressed with your treating physician.

SRNA COVID-19 Resource Page

In March 2020, we launched our COVID-19 Resource Page, to share resources and information to aid our community in finding answers to their questions about the virus. This site is frequently updated to keep members apprised of new developments. Please keep in mind that SRNA cannot provide individualized medical advice. The postings are for informational purposes only and are not intended to take the place of advice from your physician. If you have concerns about your health or treatment, please contact your physician, pharmacist, or other medical professionals.

COVID-19 Q&A Series

We at SRNA are committed to sharing what we learn from our medical experts with you and providing answers to your questions. Last April, members of our Medical and Scientific Council, Dr. Benjamin Greenberg, Dr. Michael Levy, and Dr. Carlos Pardo, each shared information regarding frequently asked questions about COVID-19 in a Q&A series created for the rare neuroimmune disorders community.

COVID-19 Vaccines Q&A Video Series

We have added a multi-part video series from Dr. Benjamin M. Greenberg, member of SRNA’s Board of Directors and SRNA’s Medical and Scientific Council, to our collection of COVID-19 Q&A resources. In the series, Dr. Greenberg discusses COVID-19 vaccinations and the implications for those with rare neuroimmune disorders. You can view all of the videos in the series here.

COVID-19 Survey

SRNA recently conducted a research study regarding the experiences of individuals with rare neuroimmune disorders during the COVID-19 pandemic. The study included phone interviews with members of our community who volunteered to share their experiences with COVID-19 and other related issues. We are currently analyzing the data and look forward to sharing the findings of this study soon.