NEW SETBP1 Study

NEW STUDY – Identification of SETBP1 Mutations by Gene Panel Sequencing in Individuals With Intellectual Disability or With “Developmental and Epileptic Encephalopathy” Our findings contribute to further characterizing the associated phenotypes and suggest inclusion of SETBP1 in the list of prioritized genes for the genetic diagnosis of overlapping phenotypes ranging from non-specific neurodevelopmental disorders to […]

SETBP1 Community Research Study (SCoReS)

SETBP1 Community Research Study (SCoReS) A new SETBP1 disorder collaborative study just launched!! If you or your child have SETBP1 disorder, please consider signing up for the SCoReS research project. The Department of Psychological Sciences at Tarleton State University (TSU) has received approval to research the parenting experiences within the SETBP1 Community. This project is […]

Quarterly SETBP1 Collaboration Call

Q4 Quarterly SETBP1 Collaboration Call Thursday, December 10th at 11:00 am CST/12:00 pm ET/5:00 pm GMT The purpose of the quarterly SETBP1 calls is to enable researchers, specialists, scientists, and industry from around the world to share their research, their expertise, and collaborate with each other. The goal is to move research forward faster through […]

SETBP1 Disorder Grants Under Review!!

The University of Pennsylvania Orphan Disease Center accepted grants for a one-year grant for $67,943 for SETBP1 Disorder research through their Million Dollar Bike Ride Pilot Grant program! The one-page LOI was due no later than MONDAY, SEPTEMBER 23, 2019 by 8pm (EST) and the grant proposals were due no later than THURSDAY, OCTOBER 24, […]

SETBP1 Disorder Grant Now Available!!

The University of Pennsylvania Orphan Disease Center is now accepting letters of interest for a one-year grant for $67,943 for SETBP1 Disorder research through their Million Dollar Bike Ride Pilot Grant program! The one-page LOI is due no later than MONDAY, SEPTEMBER 23, 2019 by 8pm (EST). SETBP1 Disorder Grant Details: One $67,943 grant will […]

Speech and Language SETBP1 Study!

A new SETBP1 disorder study just launched!! If you or your child have a SETBP1 difference, please consider signing up for the Murdoch Children’s Research Institute’s research project into speech and language skills in individuals with SETBP1 variants: an international study. The project aims to improve overall understanding of speech and language abilities in individuals […]