Latest Past Events

Young Adult Sibling Meet Up – February 2025

Virtual

Young adult siblings, please join us Sunday, February 9 from 4:00-5:00 pm UTC+0 (UK time) for a young adult (ages 13-17) sibling meet up! If you haven't yet signed up for our sibling email list, please click here. For more sibling information and resources, click here. Questions? Contact our Sibling Ambassador Chrissie Brock at siblings@pura-syndrome.org […]

Adult Sibling Meet Up – February 2025

Virtual

Adult 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 […]

Registry Meet-Up #2: November 17

Virtual

This 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 […]