This week, one of the biggest scandals in the history of PANS/PANDAS Advocacy is afoot: an effort to re-classify PANDAS/PANS as a rare disease—behind closed doors, without a consortium of researchers, without clear scientific evidence, and as usual, without consulting patients.
Narrowing the definition of PANS would mean thousands of patients could lose treatment possibilities, and thousands more will become much, much less likely to even be diagnosed.
Reclassifying PANDAS/PANS as rare is a terrible idea that needs to be stopped.
If enough of you read this post, share it, and write to the PANDAS-related organizations to oppose defining PANS as “rare,” I think we can stop a looming disaster… But if you don’t, these people could undo two decades of advocacy.
The Background of the 2026 PANDAS/PANS Scandal
I received a tip from an anonymous source that some prominent figures in the PANS community––a couple of researchers and the head of a PANDAS/PANS advocacy organization––are vying to reclassify PANS as a rare disease with the USA’s HHS (Health and Human Services).
Continue reading “The Great PANS Scandal of 2026: And Why You Need to Act NOW”