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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

or complete the experession of interest form for researchers

 

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

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Now Recruiting - Speech and language research for PURA syndrome

Research is creating new knowledge.    #PURAresearch

We Need Your Support Today!

Information on this website is not a substitute for personal medical advice. Families should consult a medically qualified physician in all matters relating to genetic diagnosis, management, and health. Information about PURA and genetics in general is a very fast moving area and while the information on this website is regarded as the best at the time of publication, some facts may change later.

PURA Foundation Australia acknowledges the traditional Aboriginal owners of the land we work on and pay our respects to them, their culture and their Elders past, present and future. We are committed to cultivating a safe, accessible and inclusive work environment for our Board and Volunteers that values and embraces people of all backgrounds, genders, cultures and abilities.

© PURA Foundation Australia 2023. 
PO Box 90, Diamond Creek 3098   
contact us info@purafoundation.au

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