Policy & Advocacy
Official 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
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 Acute-onset Neuropsychiatric Syndrome and…
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 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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