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New – Rope Bracelet (adjustable)
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Rett News Winter 2021

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Rett News Summer 2022

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Made with Love by Kay

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Patience: by Victoria Scott (Hardcover)
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Angel White Holly Christmas Card
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Rett News Summer 2021

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UK CPN Membership
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Rett News Summer 2020

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Rett News Spring 2020

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Rett News Issue 3 Winter 2019

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Rett News Issue 2 Summer 2019

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Rett News Issue 1 Spring 2019

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Rett News Issue 4 Winter 2018

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Dr Daniel Lumsden, Epilepsy & Movement Disorders in Rett syndrome

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Dr Ana Abdala, Research: Dysautonomia & Breathing

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Dr Adrian Kendrick, Breathing & Sleep Problems in Rett syndrome

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Victoria Federico Presentation EHC Plans

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Rett News Issue 3 Autumn 2018

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An introduction to AAC for people with Rett syndrome and other complex communication needs

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Rett News Issue 3 Autumn 2017

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Rett News Issue 2 Summer 2017

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Rett News Issue 1 Spring 2018

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Rett News Issue 2 Summer 2018

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Rett News Issue 4 Winter 2017

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Penguins (Time Together)
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Kissing Robins
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Rett News Issue 1 Spring 2017

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Modelling a Robust Language System: Callie Ward, Liverpool Oct 16

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Scoliosis in Rett Syndrome: Alex Gibson, Liverpool Oct 16

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Sleep & Breathing Problems; Adrian Kendrick, Liverpool Oct 16

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Rett UK Infographic 2015 16

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Rett News Issue 4 2016

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Rett News Issue 3 2016

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Catherine Kelly at Christmas
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Peace, Hope and Joy Christmas Card
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Rett News Issue 2 2016

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Julian Paton: Breathing, Looking for inspiration to help cure Rett syndrome

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Rett News Issue 1 2016

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Useful Web Site Links

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Rett News Issue 4 2015

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Philip Warford: Mental Capacity, Power of Attorney and Court of Protection Presentation

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Mike Kerr: Primary Care and Rett Syndrome Presentation

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Question Time with our Expert Panel: Audio Recording

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N.Tomlinson: Personal Health Budget Presentation

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Hilary Truss: Supported Living Presentation

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H.Truss/N.Tomlinson: Supported Living and Personal Health Budgets Audio Recording

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Research Made Easy: Rachael Stevenson and Stuart Cobb

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Audio Recording of Rachael Stevenson/Stuart Cobb Presentation

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Rett News Issue 2 2015

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Rett News Issue 3 2015
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Rett UK Pin Badge
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Rett UK Key Ring
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Green Wrist Band
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Purple Wrist Band
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Cycling T Shirt
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Handmade Dribble Bib (pretty)
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Handmade Dribble Bib (pink polka dot)
£5.00
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Handmade Dribble Bib (birds)
£5.00
View
New – Rope Bracelet (adjustable)
£5.00
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Rett News Winter 2021

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Rett News Summer 2022

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Made with Love by Kay

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Patience: by Victoria Scott (Hardcover)
£20.00
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Angel White Holly Christmas Card
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Rett News Summer 2021

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test
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UK CPN Membership
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Social Hub

Everything that is going on at Rett UK.

Rett UK

Rett UK11 hours ago

🚨 PLEASE VOTE FOR RETT UK 🚨
It's time to vote for Rett UK for our chance to win £1,000!
The first draw is on 27th January and we would really appreciate your nominations 💜

💚There are six £1,000 draws in 2025, so the earlier you nominate, the more chances Rett UK has of being drawn.
💚Once you’ve nominated, Rett UK will be included in all the remaining £1,000 draws in 2025.
💚The more nominations Rett UK gets, the better their chances of being drawn, so once you’ve nominated please share with your network.
Please note: Nominations from previous years do not roll over.

💚If you can spare a couple of minutes to vote all you need to do is fill out a short form via the link below:

Rett UK

We could receive £1,000 in the Movement for Good draw.

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Rett UK4 days ago

📢 Your voice matters! Have your say on how the NHS can work for you.

The government is currently writing a plan to fix the issues with the NHS in England, and have created an NHS Change Consultation. We know many of you have had bad experiences with health care, and now is your chance to share your stories and have your voices heard 📢

Mencap have made it easier than ever to share your vital thoughts on how things can be improved with a new Easy Read version of the NHS consultation form 📝

Your input can make a real difference. It's quick, simple, and can be filled out on your phone or laptop.

🔗 Fill out the survey here: #surveyad" target="_blank" rel="noreferrer">https://www.mencap.org.uk/nhs-change-consultation#surveyad

#RettUK #RettSyndrome #Mencap #NHS #NHSChangeConsultation

Rett UK

Advice and Information Hub Advice and Information Hub Education Health Housing Information for healthcare professionals Keeping people safe Learning disability diagnosis Learning disability helpline Mencap Training Academy Money and benefits Relationships, friendships and sex Social care Travel Will...

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Rett UK4 days ago

🚨 Earlier this week, we joined over 40 organisations in calling for the Mental Health Bill to be strengthened to better support people with a communication disability, difficulty, or difference.

▶️ Our briefing sets out why this matters: https://www.rcslt.org/wp-content/uploads/2025/01/RCSLT-briefing-Mental-Health-Bill-Committee-Stage-Briefing-January-2025.pdf

Rett UK

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Rett UK5 days ago

Interesting new press release from Acadia concerning their application to the EMA to authorise use of trofinetide (Daybue) as a treatment for Rett syndrome in the EU 📝

You can read the full press release via the Rett Syndrome Europe website (linked below), where they've also attached an easy read version of an article describing the benefits of trofinetide for communication (based on a US study) ⬇️
🔗 https://www.rettsyndrome.eu/news/acadia-confirm-submission-to-the-ema-for-approval-of-trofinetide-known-as-daybue-in-us-and-canada/

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Rett UK5 days ago

Calling all adults with Rett syndrome! We'd love you to join our first 2025 "Peer Group for Adults" 👥

Join us for an opportunity for adults with Rett syndrome to come together, connect, have fun and communicate!

This session is taking place:
🗓 Thursday 16th January
⏰ 19:00 - 20:00
🔗 On Zoom: https://us06web.zoom.us/j/87330351034?pwd=WJJC8OiGkRWbSISFF8XXUf5bFUPzGv.1

These sessions will be facilitated by our RCCs, with activities and topics steered by the interests of the group!

There is no need for a formal communication system to be in place, any form of communication can be used (e.g. no tech, paper-based, eye gaze device). And there is absolutely no pressure or requirement to speak up - you can just come along and listen.

This is open to anybody over the age of 18 with Rett syndrome. Each person with Rett syndrome needs to be accompanied by a supporter.

To join our session THIS THURSDAY (16.01), simply click on the following link:
🔗 https://us06web.zoom.us/j/87330351034?pwd=WJJC8OiGkRWbSISFF8XXUf5bFUPzGv.1

If you have any questions or issues please get in touch 💜💚

#RettUK #RettSyndrome #PeerGroupForAdults

Rett UK

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Rett UK6 days ago

Don't miss our first "Online Peer Session" of 2025 👥
An opportunity for people with Rett syndrome of any age, to come together, connect, have fun and communicate!

This session is taking place:
🗓 Wednesday 15th January
⏰ 13:00 - 14:00
🔗 On Zoom: https://us06web.zoom.us/j/85195437474?pwd=9Zjat03ujh4JaxQRueGvRyDVMtZpQW.1

These sessions will be facilitated by our RCCs, with activities and topics steered by the interests of the group!

There is no need for a formal communication system to be in place, any form of communication can be used (e.g. no tech, paper-based, eye gaze device). And there is absolutely no pressure or requirement to speak up - you can just come along and listen.

This is open to people with Rett syndrome of ALL ages, so you could even join in from school. Each person with Rett syndrome needs to be accompanied by a supporter.

To join our session tomorrow 15.01, simply click on the following link:
🔗 https://us06web.zoom.us/j/85195437474?pwd=9Zjat03ujh4JaxQRueGvRyDVMtZpQW.1

🚨 Please note, these sessions will be taking place every four weeks, so the next session will take place on Wednesday 12th February (using the same zoom link) 🚨

If you have any questions or issues please get in touch 💜💚

#RettUK #RettSyndrome #OnlinePeerGroup

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Testimonials

Elizabeth Allen

Elizabeth Allen

Caring and sharing. Informative and supportive. Great stuff for all those families. X

Becky Jenner

Gwenda Dimmock

Rett UK are a lifeline to us Rett Families. I don’t know what I would have done without them.

Joanna Tomlin

Exceptional Support!

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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