I just happened to dust off Hashan De Silva’s analysis piece on NEU, from Feb 2022, and this particular excerpt re the prevalent population of Retts patients in the US caught my eye, given the current discussion, so I thought I’d re-share.
”To determine the upside to Neuren from this deal, we need to estimate potential sales of trofinetide in the US. The first step in estimating the addressable market for a drug is identifying the patient population. There are ~7,000 Rett Syndrome patients on the patient registry run by Rettsyndrome.org. Epidemiology studies suggest that there are up to 10,000 Rett Syndrome patients in the US and anecdotally physicians estimate as many as 15,000 patients. Physicians believe that Rett Syndrome may be under or misdiagnosed presently and that with an approved treatment, parents will have an incentive to seek a definitive diagnosis, get registered with the patient advocacy groups and seek treatment.”
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