We are very well aware of how our children need a one-stop clinic where all their needs can be met but need to establish what the priorities are and how we can go about it within the NHS set-up. Dr Balasubramanian has been setting this clinic up at Sheffield Children’s Hospital for the last couple of years but there is still plenty of work to be done to establish this as a multi-disciplinary clinic. She would like to meet with UK families during the conference to identify these priorities, what the barriers are to achieving them and how these can be overcome.
The psychologists team from FIND (Further inform Neurogenetic disorders) who have been running the SATB2-Associated Syndrome Behavioral Study will be able to provide feedback on their comprehensive findings from the study. This talk will recorded and will be made available.
They will also be holding individual clinics for parents who wish to discuss any specific behavior issues. Appointments can be made on arrival.
For more information please email MariaSATB2uk@gmail.com.