Latest Research
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 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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