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  • 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 Adult Sibling Meet Up – February 2025

    Virtual

    Young adult siblings, please join us Sunday, February 9 from 4:00-5:00 pm UTC+0 (UK time) for a young adult (ages 13-17) sibling meet up! If you haven't yet signed up […]

  • Pre-Teen Sibling Meet Up – February 2025

    Virtual

    Pre-teen siblings, please join us Saturday, February 22 from 4:00-5:00 pm UTC+0 (UK time) for a pre-teen (ages 9-12) 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 […]

  • 2025 PURA Syndrome Conference

    Embassy Suites by Hilton Grapevine 2401 Bass Pro Drive, Grapevine, TX, United States

  • 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 Adult Sibling Meet Up – September 2025

    Virtual

    Young adult siblings, please join us Sunday, September 7 from 4:00-5:00 pm UTC+0 (UK time) for a young adult (ages 13-17) sibling meet up! If you haven't yet signed up […]

  • Pre-Teen Sibling Meet Up – September 2025

    Virtual

    Pre-teen siblings, please join us Saturday, September 13 from 4:00-5:00 pm UTC+0 (UK time) for a pre-teen (ages 9-12) 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 […]

  • First Grandpops Meet-up

    Virtual

    Join us for our first Grandpops Meet-up! Check out our website at purasyndrome.org/grandpops and sign up for our email list here.

  • All are Welcome Meet-Up October 2025

    Virtual

    All are welcome for a meet-up of any families that can join us! Questions? Contact Melissa at m.vaught@pura-syndrome.org