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Meet Up: Germany
VirtualMeet Up: United Kingdom
VirtualMeet Up: South America
VirtualRegistry Meet Up: France
VirtualMeet Up: United Kingdom
VirtualMeet 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 […]