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 beginning 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, and Chinese.

Key research aims are to characterise the speech and language abilities of individuals with PURA syndrome, to provide clearer diagnosis, prognosis and treatment planning, 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 the experession of interest form for researchers

 

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