Australian Senate inquiry into Epilepsy
This page lists publicly available submissions to the Senate Inquiry into Epilepsy in Australia that relate to developmental and epileptic encephalopathies (DEEs). The goal is to make these submissions easier for DEE families to find.
How to read a Senate submission
Each submission listed below includes the official Senate submission number (for example, Sub11).
To read a submission:
Visit the Australian Parliament webpage for the Senate Inquiry into Epilepsy in Australia
Open the list of published submissions (in the top right corner of page)
Locate the submission by its submission number
Sub08 - Name Withheld -severe epilepsy, multiple disabilities and a rare genetic condition
Sub11 - Name Withheld -NBEA-related epilepsy
Sub18 - Name Withheld -CSNK2B-related neurodevelopmental disorder
Sub32 - Name Withheld -Dravet Syndrome
Sub36 - Name Withheld - West Syndrome
Sub42 - Name Withheld -Doose Syndrome (myoclonic-atonic epilepsy)
Sub44 - Name Withheld - probable DEE (diagnosis not specified)
Sub45 - Name Withheld - Dravet Syndrome
Sub49 - Name Withheld - possible DEE (insufficient information)
Sub52 - Name Withheld - possible DEE (insufficient information)
Sub54 - Name Withheld-Lennox-Gastaut Syndrome
Sub55 - Name Withheld - Lennox-Gastaut syndrome
Sub56 - Name Withheld -Probable DEE – features suggest EE-SWAS/CSWS, but diagnosis is not explicitly stated
Sub63 - Dr Gabriel Dabscheck - “rebate for EEG is so bad that very few people offer EEG services for children”
Sub70 - Name Withheld - unspecified DEE
Sub79 - PURA Foundation Australia
Sub83 - Name Withheld - Panayiotopoulos Syndrome and later, at five, with Continuous Spikes and Waves in Sleep (CSWS)
Sub85 - Name Withheld - Dravet syndrome
Sub97 - Name Withheld - Lennox Gastaut syndrome with an underlying genetic cause of RNU4-2 (RENU) syndrome
Sub100 - Name Withheld - rare genetic epilepsy disorder known as PCDH19
Sub101 - Name Withheld - a poem: Those cheeks - An insight into life with a child with a DEE
Sub103 - Name Withheld - extremely rare chromosomal deletion of 2q23.3-2q24.2
Sub122 - Name Withheld - West Syndrome
Other submissions of interest
Sub71 - Hemispherectomy Foundation Australia - hemispherectomy and hemispherectomy as a treatment option for severe epilepsy.
Sub76 - Animal Therapies Ltd - focused on the role of animal-assisted supports, including seizure assistance dogs, therapeutic animal interaction and equine-assisted therapy, as adjunct supports for people living with epilepsy
Sub104 - Name Withheld - a Tasmanian social worker on the psychosocial impact of epilepsy
Sub106 - AASW Submission - Association of Social Workers on the psychosocial, access and systems issues that arise for people living with epilepsy and their families