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New guidelines a model for better management of rare conditions

We aim to ensure that high quality outcome measures are available to evaluate treatments and services for children with disability rigorously. We aim to translate our research into resources to support families, carers and clinicians.

Regression, including the loss of previously learned skills, such as hand function and communication skills, is one of the most suggestive features of Rett synd

News & Events

The internet is emerging as a valuable tool for scientists to gather data for critical research into rare diseases.

News & Events

On Sunday May 25th, the 'I love someone with Rett syndrome' team participated in the annual HBF Run for a Reason.

We investigated the occurrence of altered pain sensitivity as well as how these altered reactions to pain were observed during daily life.

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.

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.

Rett syndrome is a rare but serious neurological disorder that affects about 1 in 9,000 girls. Even more rarely, boys may be affected.