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A common complication of Rett syndrome is the development of scoliosis (curvature of the spine).nutritionandgrowthThere is limited information in the medical literature regarding the management of scoliosis. We are grateful  therefore to colleagues at Interrett who have developed some guidelines to provide information for parents and carers which may also be helpful to doctors caring for girls and women with Rett syndrome.

Scoliosis Booklet

Many thanks also to Meir Lotan for sharing this presentation on scoliosis which shows the possibilities for reducing the curve even in older people with Rett syndrome using intensive correction positioning and intervention therapies. In addition, he demonstrates that walking ability can be regained in adults with Rett syndrome.

Scoliosis in Rett Syndrome

Regaining walking ability in adults with RS

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rare disease day photo Leah


For the past 3 months, I’ve had the pleasure of being able to write this series of blogs.  Sadly, this will be the last one I write, and I would […]

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Exceptional support! I have phoned Rett UK numerous times and have always found the staff informative, professional, with the ability to empathise. I am always left with the feeling that I’m not alone in my struggle to secure the best for my daughter. Rett UK go above and beyond and I can’t thank them enough!

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