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Meet Up: Germany
VirtualMeet Up: United Kingdom
VirtualNEW! Adult Sibling Meet Up
VirtualAdult siblings, please join us Saturday, April 13 (NEW DATE) from 4:00-5:00 pm UTC+0 (UK time) for our first 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. We are beginning to offer PURA Sibling meet ups, beginning with […]
2024 PURA Syndrome Conference
For more information, go to www.puraconference.org
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 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 […]
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 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 – 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 […]