Together for PURA Kickoff Meeting 1
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 […]
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 […]
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 […]
Come 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 […]
Join 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" […]
Adult 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 […]
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 […]
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 […]
All are welcome for a meet-up of any families that can join us!
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 […]
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 […]