All are Welcome Meet-Up October 2024
VirtualAll are welcome for a meet-up of any families that can join us!
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Registry Meet-Up #1: November 2
VirtualThis meet-up has been scheduled to help families fill in the Global Patient Registry. Please be sure to visit our webpage at purasyndrome.org/registry to ensure your account is set-up prior […]
Young Sibling Meet Up – November 2024
VirtualYoung siblings, please join us Sunday, November 3 from 4:00-5:00 pm UTC+0 (UK time) for our first young (ages 4-8) sibling meet up! If you haven't yet signed up for […]
Registry Meet-Up #2: November 17
VirtualThis meet-up has been scheduled to help families fill in the Global Patient Registry. Please be sure to visit our webpage at purasyndrome.org/registry to ensure your account is set-up prior […]