One year on from the heartbreaking loss of Ruby Leigh Pollard, her family share a moving tribute to their bright, joyful little girl — the first child in the UK and Europe to receive gene therapy for Rett syndrome. Ruby’s courage, and the love surrounding her, continue to light the way for families and researchers working toward a better future for everyone affected by Rett.
Why are there so many Rett syndrome registries — and which one should you
For families living with Rett syndrome in the UK, the recent announcement that Acadia
For the third year running we had a Reverse Rett team in the Royal
The Big Give Christmas Challenge will begin at Midday on Tuesday 2nd December and
A fine pink lineA baby on the wayA new life growing inside meA black
October 2025 This month has brought two major steps forward in the race to
Gathering Dust Before you were born, I gathered up hopes, dreams. Our future made
We recently learned that Acadia Pharmaceuticals has decided to postpone indefinitely its plans to
Acadia, the company who makes the only FDA approved drug for Rett syndrome has
Taysha Gene Therapies has announced today that the FDA (the medicines regulator in the
A recent study has shown that in the very rare Preserved Speech Variant of