PURA Foundation Australia 

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Significant speech and language challenges have been reported in individuals with PURA syndrome. These challenges may impact their ability to ask for basic needs, to explain pain and medical support required, and impact their learning at school.

 

The PURA Foundation Australia, in collaboration with Translation Centre for Speech Disorders at the Murdoch Children's Research Institute - MCRI is completing research focussed on examining speech and language of PURA syndrome in a systematic manner.

 

Surveys are available in English, French, Dutch, German, Spanish, Portuguese, Italian, Polish and Chinese.

 

Individuals with PURA can be verbal, non-verbal, use communication devices, communicate through gestures or sounds.... 

Key research aims are to characterise the speech and language abilities of individuals with PURA syndrome, to provide clearer diagnosis, prognosis and treatment planning for speech support, new education materials, and to inform speech and language outcome markers necessary for future clinical trials.

 

To be involved in this international research project, please email researchers at geneticsofspeech@mcri.edu.au

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or complete this expression of interest form for the research teams

 

For more details download the study flyer or 
visit the Genetics of Speech website