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Today

  • 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

  • Grandpops Meet-up – February 2026

    Virtual

    PURA Grandparents mark your calendars! On February 28 at 1 pm CST, we will host a virtual GrandPOPS Meetup. Join us on Zoom to share our stories, photos, joys, and concerns. If […]

  • First Meet Up for PURA Families in India

    Virtual

    The PSF will be hosting a virtual meet-up for any of our families from India on Sunday, March 1, at 9:00 am IST. If you would like to join this […]

  • 2026 PURA Syndrome Conference

    Holiday Inn Munich - City Centre Holiday Inn Munich - City Centre Hochstraße 3,, Munich, Germany