Calendar of Events
M Mon
T Tue
W Wed
T Thu
F Fri
S Sat
S Sun
0 events,
0 events,
0 events,
1 event,
0 events,
0 events,
1 event,
Young Adult Sibling Meet Up – October 2024
Young Adult Sibling Meet Up – October 2024
Young adult siblings, please join us Sunday, October 6 from 4:00-5:00 pm UTC+0 (UK time) for our first 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 […]
0 events,
0 events,
0 events,
0 events,
0 events,
0 events,
1 event,
Pre-Teen Sibling Meet Up – October 2024
Pre-Teen Sibling Meet Up – October 2024
Pre-teen siblings, please join us Sunday, October 13 from 4:00-5:00 pm UTC+0 (UK time) for our first pre-teen (ages 9-12) 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 [email protected] Please […]
0 events,
0 events,
0 events,
0 events,
0 events,
0 events,
0 events,
0 events,
0 events,
0 events,
0 events,
0 events,
1 event,
All are Welcome Meet-Up October 2024
All are Welcome Meet-Up October 2024
All are welcome for a meet-up of any families that can join us!
0 events,
0 events,
0 events,
0 events,
0 events,
1 event,
Registry Meet-Up #1: November 2
Registry Meet-Up #1: November 2
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 to the meeting. On that same page is a checklist of items that would be helpful to have gathered prior to the meeting as well. […]
1 event,
Young Sibling Meet Up – November 2024
Young Sibling Meet Up – November 2024
Young 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 our sibling email list, please click here. For more sibling information and resources, click here. Questions? Contact our Sibling Ambassador Chrissie Brock at [email protected] Please […]