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  • 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 […]

  • 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 […]

  • Young Sibling Meet Up – February 2025

    Virtual

    Young siblings, please join us Sunday, February 23 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 […]

  • Adult Sibling Meet Up – September 2025

    Virtual

    Adult siblings, please join us Saturday, September 6 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 Sibling Meet Up – September 2025

    Virtual

    Young siblings, please join us Sunday, September 14 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 […]