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Latest Research News

Here we aim to bring you research news from around the world so you are always kept up to date.

Meir Lotan, who recently presented on his work at our Family Weekend has just published a new paper about the importance of therapeutic interventions for people with Rett syndrome. This is a well balanced paper that recognises that whilst we all hope a cure becomes a reality, we want to make sure that people with Rett syndrome have access to the best possible support and interventions in the meantime. Keeping them as well as possible gives them the best opportunity to make the most of any treatments and even a cure, when available. Worth sharing this with people involved in the care of someone with Rett syndrome, especially providers of therapeutic services. (Nov 2015)

The Time is Now: The Need for Intensive Therapeutic Interventions.

New Discovery About the X Chromosome Opens Up Possible Avenues for Future Treatments for Rett Syndrome  – funded by (July 2015)

Neuren and the Orphan Drug Status: An Overview (this drug is called Trofinetide, being developed by Neuren) – funded by and update June 2015 here on Medscape

Italians using Sarizotan which has been shown to reduce apnoea and hyperventilation in MECP2 knockout mice by 70-85%. Sounds like they are a step closer to setting up clinical trials for this drug. (June 2015)

Newron Oct 2015 Update on Sarizotan

Ketamine clinical trials – funded by Rett Syndrome Research Trust (April 2015)

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susanne and mia


Guest blog: Many thanks to Susanne Crosby, whose daughter Mia has Rett syndrome for letting us share her blog originally written for Scope after Susanne was involved with their Face […]

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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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