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Level of purposeful hand function as a marker of clinical severity in Rett syndrome

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

Resources

These resources include the best available evidence about the course of Rett syndrome and its management as well as practical information about family associations, specialist clinical centres and links to relevant websites.

Family resources

Rett Syndrome Association of Australia and ANZACRett are two family-oriented organisations.

Participate in AussieRett

AussieRett is the Australian Rett syndrome research study. We collect information on Australian individuals with Rett syndrome from both families and clinicians

Participate in InterRett / MECP2 Duplication Research

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.

Our popular workshops are back these school holidays

Our popular workshops for kids are back these school holidays and we have a jam-packed program full of fun and engaging science activities!

Mindful Self-Compassion for LGBTQ youth: a multi-site randomized controlled trial

Amy Penelope Yael Finlay-Jones Strauss Perry BPsych(Hons), MPsych(Clinical), MHealthEcon, PhD (Clin Psych) BA, MPH, PhD BPsych (Hons) MPsych (Clin)

Fundraise

You are so valuable to us! Not only can you help fund our research into what makes kids healthy and happy, but you can also raise awareness of how important that work is.

Assessment of p.Phe508del-CFTR functional restoration in pediatric primary cystic fibrosis airway epithelial cells

Assessment of p.Phe508del-CFTR functional restoration in pediatric primary cystic fibrosis airway epithelial cells Abstract Background Mutations in

Guidelines, reports and books

We have recently developed recommendations to support clinical practice for gastro-intestinal disorders including growth and scoliosis in Rett syndrome.