Posts by PACE Foundation
Understanding the Numbers: Why PANS/PANDAS is Classified as a Rare Disease
Since the recent announcement that PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) has officially joined the 2020 listing of PANDAS on the NIH Genetic and Rare Diseases (GARD) directory, the PACE Foundation has received inquiries from our community about PANS/PANDAS prevalence, federal recognition, and what the word “rare” really means. For many families, that label lands with…
Read MoreOfficial Recognition: PANS Joins PANDAS on the NIH Rare Disease List
Big news for our community! We are thrilled to share that the Genetic and Rare Diseases Information Center (GARD), which is managed by the National Institutes of Health (NIH), has officially added Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) to its list of rare diseases. If you’ve been in this fight for a while, you know how…
Read MorePANS/PANDAS Insurance Mandates: A State-by-State Guide to Your Rights
Updated: June 1, 2026 If you are reading this, you likely know the heart-shattering experience of watching your child change overnight. One day they are themselves: happy, curious, and thriving: and the next, they are grappling with a sudden onset of severe anxiety, OCD, tics, or personality changes. This is the reality of PANS/PANDAS (Pediatric…
Read MoreMajor Win: Aetna Now Covers PANS and PANDAS Treatments (Including IVIG!)
If you’ve ever spent hours on hold with an insurance company only to be told that your child’s life-altering symptoms are “behavioral” or “experimental,” take a deep breath. We have some news that might actually make you want to do a little happy dance in your kitchen (or at least exhale that breath you’ve been…
Read MoreA Blueprint for PANS/PANDAS Care: New Landmark Paper from the U of A CPAE Center of Excellence
For many families navigating the world of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections (PANDAS), the journey to a diagnosis is often marked by confusion and a sense of being unheard. At The PACE Foundation, we have spent over a decade working to change that narrative. Today, we…
Read MorePANZYGA IVIG Study Updates: Promising Results for PANS/PANDAS Research
While the data from the IVIG trial is under review, we are pleased that Octapharma has officially released a statement regarding the IVIG trial. Below is an excerpt from their announcement: “From baseline (week 0) to week 9, there was a mean improvement of 31.1% (SD 40.68) in the PANZYGA® group CY-BOCS score as compared…
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