This contact registry form is intended for primary caregivers of individuals with SATB2-associated syndrome (SAS, Glass Syndrome, 2q33.1 deletion/microdeletion/mutation). If you are an extended family member or friend, please register for our Newsletter.
By enrolling in the contact registry, I agree to allow the SATB2 Gene Foundation to store information about myself and/or my dependent with SATB2-associated syndrome (SAS) so that I may be contacted with information about the availability of research opportunities. I may also receive updates about medical discoveries that may impact care decisions about SAS. I understand that my data may be used in aggregate to compile and publish statistics about the incidence of SAS.
Completion of this form also grants you access to the closed resource portal, which provides libraries of SAS resources, as well as the distribution list for newsletters, conference and research announcements and special mailings. This contact registry will not be shared with external organizations without your consent. The SATB2 Gene Foundation takes data collection very seriously.
If you are interested in enrolling in the SATB2-associated syndrome patient registry at Arkansas Children’s Hospital, please find more information here: https://www.satb2gene.org/medical.