We are compiling resources and information on the status of COVID-19 and rare neuroimmune disorders, and members of our Medical and Scientific Council are providing insight into how COVID-19 may impact people diagnosed with ADEM, AFM, MOGAD, NMOSD, ON, and TM. Some of the resources are:
For a full list of resources, please visit the COVID-19 section of our Resource Library. The information and resources provided are meant to be an educational resource and do not constitute medical advice. For specific information about treatments, symptoms you may be experiencing, or questions about personal exposure as someone with a rare neuroimmune disorder or as a caregiver, please contact your physician directly.
SRNA recently launched a research study, Experiences during COVID-19 Pandemic Among Those with Rare Neuroimmune Disorders. The intention of this research project is to describe the experiences of individuals with rare neuroimmune disorders during the COVID-19 pandemic. If you are interested in participating in the study, you can find information and the link to sign up on the study page.
We have also been following recent news reports that AstraZeneca confirmed that clinical trials assessing its Oxford University partnered coronavirus vaccine AZD1222 have resumed in the UK, following a green light by the Medicines Health Regulatory Authority (MHRA). At the time of this writing, the trial is still on hold in the United States. We still do not have official confirmation of the diagnosis of transverse myelitis of one of the participants, or details such as whether it is partial or longitudinally extensive transverse myelitis, what the MRI and antibody testing findings were, and what the CSF (cerebrospinal fluid) showed. These events continue to be of great importance to our organization and our community. We have been reaching out to experts in our medical professional network and the NIH, and we know they are all asking the same questions we are to understand the safety and efficacy of these vaccine development trials.
For those in our community who would like to learn more about the different types of vaccines being developed and about COVID-19 and rare neuroimmune disorders, Dr. Benjamin Greenberg addresses this in his talk on “COVID-19 and Rare Neuroimmune Disorders”, referenced above.
We will continue to follow the situation and update our community as we learn more.
If you have any questions about COVID-19 and rare neuroimmune disorders, please share them with us.