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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 […]

  • South Bend Cubs Game to Benefit the PURA Foundation

    Four Winds Field South Bend, IN, United States

    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

    $14

  • Lemonade Stand for PURA

    Belsan Bait & Tackle 4 Brook St, Scituate, MA, United States

    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 Sibling Meet Up – September 2024

    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 Sibling Meet Up – October 2024

    Virtual

    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 Sibling Meet Up – October 2024

    Virtual

    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 […]