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We investigated the occurrence of altered pain sensitivity as well as how these altered reactions to pain were observed during daily life.
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Critical mass in rare diseases - an innovative internet approachThe internet is emerging as a valuable tool for scientists to gather data for critical research into rare diseases.
We also wanted to find out whether any particular behaviours were associated with any specific mutation types.
Through InterRett we collect information on individuals with Rett syndrome on a global level. If you are a participant you can complete your questionnaire here.
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HBF Run for a Reason 2013What a fabulous day we had on Sunday at the HBF Run for a Reason in Perth, where Rett syndrome was extremely well represented!
We investigated what parents thought about the ways to manage scoliosis and what they thought they needed to help them better manage their daughter's scoliosis.
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New guidelines a model for better management of rare conditionsNew guidelines a model for better management of rare conditions
Rett syndrome is a rare but serious neurological disorder that affects about 1 in 9,000 girls. Even more rarely, boys may be affected.
With the help of clinicians and families who have children with Rett syndrome, our research aims to improve understanding of Rett syndrome.
We used multiplex ligation-dependent probe amplification to examine the MECP2 gene sequences in 149 girls and 1 boy.
What role will you play in creating a brighter and healthier future for our kids?
Staying physically active is an important part of a healthy lifestyle. ActiveRett is a dedicated resource for helping families support their child with Rett syndrome to keep active.
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Visit to Shenzhen, ChinaHelen and Jenny visited Shenzhen in the south of China twice during 2013 to talk with clinicians and families at the Shenzhen Children's Hospital.
We wanted to examine the effects of spinal fusion surgery to treat scoliosis on the functional abilities of girls and women with Rett syndrome.
Funded by the International Rett Syndrome Foundation, this international online database examines the clinical features and genetic characteristics.
We have recently developed recommendations to support clinical practice for gastro-intestinal disorders including growth and scoliosis in Rett syndrome.