12 events found.
Young Adult Sibling Meet Up – October 2024
VirtualYoung 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 […]
Pre-Teen Sibling Meet Up – October 2024
VirtualPre-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 siblings@pura-syndrome.org Please […]
All are Welcome Meet-Up October 2024
VirtualAll are welcome for a meet-up of any families that can join us!
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 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. […]
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 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 Please […]
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 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. […]
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 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 Please continue […]
Young Adult Sibling Meet Up – February 2025
VirtualYoung 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 […]
Pre-Teen Sibling Meet Up – February 2025
VirtualPre-teen siblings, please join us Saturday, February 22 from 4:00-5:00 pm UTC+0 (UK time) for a 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 siblings@pura-syndrome.org Please continue […]
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 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 Please […]
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