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  • NEW! Adult Sibling Meet Up

    Virtual

    Adult 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 […]

  • Together for PURA Kickoff Meeting 1

    Virtual

    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 […]

  • Together for PURA Kickoff Meeting 2

    Virtual

    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 […]