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  • 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 […]

    $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" […]

  • 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 […]

  • Registry Meet-Up #1: November 2

    Virtual

    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 […]

  • Young Sibling Meet Up – November 2024

    Virtual

    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 […]

  • Registry Meet-Up #2: November 17

    Virtual

    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 […]

  • Adult Sibling Meet Up – February 2025

    Virtual

    Adult siblings, please join us Saturday, February 8 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 […]