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"Compassionate Use" treatments are novel treatments not widely available to everyone, but ones that holds great promise for potentially becoming a widely used treatment in the future.

News & Events

Helen 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 developed recommendations to assess and manage issues relating to poor growth and weight gain in Rett syndrome, including consideration of gastrostomy.

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 investigated our data from family questionnaires to see how feeding difficulties related to age, the type of MECP2 mutation, and the use of gastrostomy.

When you build routines into your day to increase uptime, it doesn’t only affect the person with Rett syndrome; it affects the whole family.

We developed a measure of hand function, and then investigated relationships between hand function, type of MECP2 mutation, age and severity of symptoms.

Liana’s story begins nine years ago. It starts with a sore ankle, a fever, a trip to the emergency room and clinic and finally a diagnosis of acute rheumatic fever (ARF).

Noeletta McKenzie is a Champion for Change, RHDAustralia, and community representative and advocate for the START study.

News & Events

Meet Beau Jones. Beau is nine-years-old and lives in Eaton where he likes playing basketball and hanging out with his brothers. He’s also passionate about standing up to cancer!