We continue to see and moderate community questions about experiences with COVID-19 in individuals with AGS, so we wanted to offer a preliminary view of the data. In the coming weeks, we’ll have a data scientist volunteering with us to examine the responses in greater depth. We’d like to characterize the experiences and provide a better description of the age, condition, and medications of the individuals represented in this study. All we can offer right now is a high level count of the number of individuals in our registry that have been vaccinated against or infected with COVID-19, but we’ll provide more detail about their overall health and characteristics soon.

It’s too early for us to draw conclusions, but the surveys suggest that COVID-19 vaccination in individuals with AGS might be safe. To our surprise, we find that COVID-19 may have contributed to an overall worsening of some people’s health, many weeks after infection. It’s important to remember that these are unverified patient reports, but we have been previously unaware of anecdotes that some with AGS may suffer “long-COVID.”