Together for PURA Kickoff Meeting 1
Wouldn’t it be amazing if PURA families got together to raise awareness in our communities and invite others to join us in our mission to support and drive research, as […]
12 events found.
Events
-
-
Virtual
-
Together for PURA Kickoff Meeting 2
VirtualWouldn’t it be amazing if PURA families got together to raise awareness in our communities and invite others to join us in our mission to support and drive research, as well as serve and empower families impacted by PURA Syndrome? WE can do this, and you can help! Many of you have indicated that you […]
-
-
South Bend Cubs Game to Benefit the PURA Foundation
Four Winds Field South Bend, IN, United StatesCome out to Four Winds Field in South Bend, IN on August 8th to raise awareness for the PURA Syndrome Foundation! Every ticket purchased donates $3 back to the PURA Syndrome Foundation. Buy Tickets here to attend the game Donate to Teresa's fundraiser here to support PURA Hosted by PURA Mom, Teresa Hayden
$14 -
Lemonade Stand for PURA
Belsan Bait & Tackle 4 Brook St, Scituate, MA, United StatesJoin us for our Together for PURA Lemonade Stand at Belsan Bait & Tackle on August 17, 2024 from 11 am - 3:00 pm in Scituate, MA. Buy a "virtual" glass of lemonade here to support PURA. Hosted by Vivienne Conrad and her grandmother, Nancy Boccia
-
-
Adult Sibling Meet Up – September 2024
VirtualAdult siblings, please join us Sunday, September 29 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 […]
-
-
Germany Meet Up October 2024
Virtual -
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 […]
-
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 […]
-
-
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 […]
-
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 […]