WHEN: Started February 1st, runs through February 28, 2018 World RARE Disease Day and culminates on Saturday, March 3rd.
WHERE: Join us at The Carousel at 12103 Conrad Rd, Austin, TX from 10am-12pm. Virtual participation is welcome .
WHAT: Come ride the Carousel for SETBP1 disorder! All donors get a free ride on the Carousel! Tickets for rides on the Carousel and other fun activities are $5 at the event. Bring your friends and family, take photos, enjoy food and beverages and help spread awareness of the rare neurodevelopmental disorder, SETBP1 disorder!
The RARE Carousel is a unique partnership between Festival of the Children Foundation and Global Genes that provides an exciting and innovative way for SETBP1 Society to raise funds, cultivate new donors, and increase awareness. We are fundraising to promote SETBP1 disorder Research!
Click here for the Press Release describing the event.
SETBP1 Virtual Family Conference
January 13, 2018 from 2:00pm-4:00pm EST/7:00pm-9:00pm GMT
This conference was hosted in partnership with Simons VIP Connect and Boston Children’s specialist Dr. Siddhardth Srivastava.
Watch the video of the presentations.
All families with a child with a SETBP1 mutation are invited to attend. This gives attendees the opportunity to hear the latest research on individuals with a suspected loss-of-function SETBP1 mutation (SETBP1 disorder). Send an email to email@example.com if interested in learning more about the conference.