Registry Meet-Up: January 26, 2025
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 […]
Loading view.
Meet-Up
Adult Sibling Meet Up – February 2025
VirtualAdult siblings, please join us Saturday, February 8 from 4:00-5:00 pm UTC+0 (UK time) for an adult (ages 18+) sibling meet up! If you haven't yet signed up for our […]
Young Sibling Meet Up – February 2025
VirtualYoung siblings, please join us Sunday, February 23 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 […]