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Here you'll find all the latest information on Rett Syndrome research, Reverse Rett and other news that impacts our community.

Rhea’s 2016 journey

by Beth Johnsson

At the end of 2015, it was hard to imagine how Rhea Kara, our youngest ambassador, talented artist and prolific fundraiser, could top the year she’d just had: shortlisted for National Young Fundraiser of the Year, recipient of a...

What’s breathing got to do with it?

By  Dr. J Singh, MSc, PhD

My lungs felt if they were on fire and I could not breathe Daddy.’  This is what my daughter told me one day as she was playing tag in the park during a cold winter’s day. Breathing is fundamental to all life processes;...

Rare Disease UK: my sister, Rett syndrome, and hope

Sometimes I sit around and think of things my sister has never done.

Amber has never chewed a piece of gum. I hope she has never experienced heartbreak. She has never held a cold beer up to her lips on a hot day and said, ‘ahh.’ She has never sat a...

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