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Critical mass in rare diseases - an innovative internet approach
The internet is emerging as a valuable tool for scientists to gather data for critical research into rare diseases.
Research Advisor Application
Guide our sibling research!
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Guide our sibling research!
Rural Cancer Siblings
We want to hear from siblings living outside of Australian cities!
Sibling Support and Teen Talk Studies
Sibling Support and Teen Talk Studies form
Infographics
The visual representation of Teen Talk study findings
Autonomic breathing abnormalities in Rett syndrome: caregiver perspectives in an international database study
Our aims were to characterize the abnormal breathing patterns and abdominal bloating, investigate the distribution of these by age and mutation type and examine their impact and management from a caregiver perspective.
An exploration of the use of eye gaze and gestures in females with rett syndrome
Eye gaze is used more frequently than gestures for communication, and this is related to age, MECP2 mutation type, and gross motor abilities