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Derbarl Yerrigan Health Service (DYHS) has developed a holistic paediatric service unit anchored in primary health care and underpinned by care coordination provided by an experienced nurse and multi-disciplinary team.
Rett syndrome is a rare but serious neurological disorder that affects about 1 in 9,000 girls. Even more rarely, boys may be affected.
The Australian Rett Syndrome Study is based at The Kids Research Institute Australia located in Subiaco, Western Australia. This study was established in 1993.
Funded by the International Rett Syndrome Foundation, this international online database examines the clinical features and genetic characteristics.
MECP2 duplication syndrome is a rare disorder neurodevelopmental disorder that, unlike Rett syndrome, mostly affects boys.
One of the many reasons for setting up the International CDKL5 Disorder Database was to learn more about this condition.