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 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 […]
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 Syndrome Foundation. Buy Tickets here to attend the game Donate to Teresa's fundraiser here to support PURA Hosted by PURA Mom, Teresa Hayden
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" glass of lemonade here to support PURA. Hosted by Vivienne Conrad and her grandmother, Nancy Boccia
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 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 continue […]
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 […]
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 […]
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 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 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 […]
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. […]