April 25, 2023
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As we’ve communicated to the CRD and scientific communities, a team of researchers and clinicians led by Yale University and UMass Chan Medical School has been studying what happened to Terry. We wanted to provide an update that their study will be published on the pre-print server medRxiv.org within the next three weeks.
Our focus has been on getting the best learnings we can from Terry’s outcome and sharing those learnings for the benefit of the entire scientific community, and we thank you for your patience during this important process.
Cure Rare Disease, a non-profit organization (Tax ID number 82-2473513), is qualified as a tax-exempt organization under section 501(c)(3) of the IRS and has been designated as a “public charity” under section 170.