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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 for our sibling email list, please click here. For more sibling information and resources, click here. Questions? Contact our Sibling Ambassador Chrissie Brock at siblings@pura-syndrome.org […]

  • 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