Rett UK

31/05/2026

Don’t forget our next ‘Peer Group for All Ages’ is happening tomorrow 👥
An opportunity for people with Rett syndrome of any age, to come together, connect, have fun and communicate!

Join the session tomorrow morning:
🗓 Monday 1st June
⏰ 10:15 - 11:15
🔗 On Zoom: https://us02web.zoom.us/j/86795467253?pwd=lW8pdHvNSMDpz6XENdUKtX8JkNUIlH.1

These sessions will be facilitated by our CommEd Support Team, 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 morning (Monday 01.06), simply click on the link below:
🔗 https://us02web.zoom.us/j/86795467253?pwd=lW8pdHvNSMDpz6XENdUKtX8JkNUIlH.1

Can’t join this session? These sessions happen monthly, so follow our socials to learn about the next one 🗓️

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

28/05/2026

📝 Rett Insights #16: Transition 📝

Transition is the process of moving from children’s services to adult services as a young person grows up. For young people with learning disabilities, transition should happen slowly and with good planning. The aim is to make sure the young person continues to get the right care, support, and opportunities as they become an adult 💜

Read this Insight to learn more about transition options and our advice on nurturing a safe and successful transition for your young people. Plus, as always, we're also highlighting some key resources available for you on our website 💻

🔗 You can learn more by scanning the QR code or clicking the link below:
➡️ Rett UK Transition Guide: https://www.rettuk.org/go/transition/

Check you local authority website too, for information about the transition process in your area 🏡

If you have any questions, please feel free to get in contact with our team, and be sure to check out the various resources we offer on our website and socials 📚

28/05/2026

Don't miss your chance to join our exclusive Rett UK 400 Club...buy a share now for your chance to win some great prizes, all while supporting Rett UK 🥳

Membership is limited to 400 people and is open to members of Rett UK, their relatives, friends and supporters.
Each share costs £12.00 for the year and you may buy a maximum of 20 shares per person.

A number will be allocated for each share you buy and all numbers are entered into the monthly prize draws 🎁

Approximately 50% of the income each year will be paid out in prizes and the balance will go into Rett UK’s funds.

Please support us if you can by buying one share (or more!) 💜💚

Find out more information and join the Rett UK 400 Club here:
🔗 https://forms.office.com/e/MtMMaECAr0

27/05/2026

📢 Have Your Say: Timms Review on Personal Independence Payment (PIP) 📢

Rett UK are part of the Carers Poverty Coalition and if parents could spare 5 minutes to be able to complete this survey it would be really helpful!

The Government has launched the Timms Review of Personal Independent Payment (PIP) "to ensure that PIP is fair and fit in a changing world". As part of the Review, it is currently running an open call for evidence, closing on Thursday 28 May at 11.59pm 🚨

As PIP acts as a gateway to carers' benefits, it is important to highlight the impact any changes to PIP would have on carers. To help with this, the Carers Poverty Coalition have prepared a short set of key lines relating to unpaid carers, which are attached for your use in consultation responses. If you were not planning to respond, we hope these lines will help with a short submission.

You can access their accompanying document below:
📝 https://rettuk-my.sharepoint.com/:w:/g/personal/lottie_townend_rettuk_org/IQAxoAAlb058To89UiY72eQtAZp7RTvDoVyrKhWsDT_-C-g?e=DYBisN

🗳️ Responses can be submitted via the online form:
🔗 https://forms.office.com/pages/responsepage.aspx?id=6fbxllcQF0GsKIDN_ob4w8LRVgA-oNdOkoFuLei_fBFUQ0VEQ1JUOThJRElMWTFFWDQ3WFA5REMwSSQlQCN0PWcu&route=shorturl
📧 or by emailing: [email protected]

Any questions please let us know.

27/05/2026

Will we see you at our next MINI Peer Session taking place this weekend? 🧸
Don’t miss this session designed for children aged 0-7, with age compatible songs, books and chat!

Join us this weekend:
🗓 Saturday 30th May
⏰ 09:00 - 09:45
🔗 On Teams: https://teams.microsoft.com/l/meetup-join/19%3ameeting_Zjg0MGFjMzMtNzM5NC00MWFhLTk3NzAtNGRlMTAwMmZjM2Uy%40thread.v2/0?context=%7b%22Tid%22%3a%22e9c381c1-2782-48be-82fb-16b5359f0399%22%2c%22Oid%22%3a%227c788a7a-2b19-4466-afeb-09ed3fbaa284%22%7d

This social group will be facilitated by our CommEd Support Team and is aimed at children aged 0-7 with Rett syndrome and their Communication Partners!

These sessions will be structured for the younger age group with age compatible songs, books and chat. No need to book, just turn up!

To join our session on Saturday (30.05), simply click on the Teams link below ⬇️
🔗 https://teams.microsoft.com/l/meetup-join/19%3ameeting_Zjg0MGFjMzMtNzM5NC00MWFhLTk3NzAtNGRlMTAwMmZjM2Uy%40thread.v2/0?context=%7b%22Tid%22%3a%22e9c381c1-2782-48be-82fb-16b5359f0399%22%2c%22Oid%22%3a%227c788a7a-2b19-4466-afeb-09ed3fbaa284%22%7d

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

21/05/2026

A huge thank you to everyone who attended this year’s Quiz Night hosted by the St Albans, Harpenden & Berkhamsted teams at Rayden Solicitors. Now in its third year supporting Rett UK 🎉

A special thank you to the amazing team at Rayden Solicitors, with 9 of their team members taking on an incredible challenge this August, abseiling down the Peacehaven Cliffs in support of Rett UK! 🧗‍♀️💜

19/05/2026

📢 Have Your Say on Children's Health in Scotland 📢

Children's Health Scotland are celebrating 50 years and to do so they want to hear your experiences as part of their biggest ever National Health Rights Survey. They want to understand what health and health rights look like for children, young people and families across Scotland in 2026 - and the insight from Health Professionals across all services is invaluable 💜

They explain: "We Can Drive Real Change for Children’s Health - But We Need You. We want to ensure that children, families, and the professionals who support them all have the opportunity to contribute.
Your experiences matter. By taking a few minutes to complete the survey above, you will help shape our work, support our Health Rights Defenders, and strengthen children’s voices as we work with services and decision‑makers across Scotland."

Learn more about the survey and share your experiences via the link below:
🔗 https://www.childrenshealthscotland.org/nationalsurvey26/

🚨 The deadline to contribute is Monday 8th June, so have your say today 🚨

Take part in our National 'My Health, My Rights' Survey and share your experiences as a child or working with children.

16/05/2026

🏃 Shoutout to David who will be taking part in the Helsinki Marathon today for 🏃

David is running in honour of family friend Niamh, who has Rett syndrome 💜
He explains: "I first became aware of Rett syndrome when my mum started providing weekend respite care for Niamh (both pictured above). Over the past few years, we've come to be friends with Niamh and her family, and so I thought this marathon was a good opportunity to raise some funds for this very worthy (and under-supported) cause."

You can read David's full story and donate to his fundraising page via the link below:
🔗 https://justgiving.com/page/david-cakebread-helsinki-2026

Good luck David, and thank you for taking on this challenge for Rett UK 🍀

15/05/2026

📢 Will you be joining us next week for our next Families Together Support Group meeting? 📢

The next session is taking place:
🗓 Wednesday 20th May
⏰ 13:30 - 15:00
🔗 Teams: https://www.rettuk.org/go/families-together-meetings

This group is a supportive space to share experiences, practical advice, resources, and encouragement. We’ll explore topics such as adult healthcare, ageing with Rett, daily care, communication, mobility, accessing services, future planning, and emotional well-being.

🌟 Theme for this session: Adult Living Options for Individuals with Rett Syndrome 🌟
Following previous discussions in this group, we feel this is a beneficial topic for a lot of families at this time. This is a chance for parents and carers to share experiences, discuss challenges, and learn what has worked for others. We hope to create a supportive space where families can feel informed and connected as they plan for the future.

🔗 To join this session, simply click on the Teams link below:
➡️ https://www.rettuk.org/go/families-together-meetings

Be sure to also join our Facebook group so you don't miss any of the discussion or support:
🔗 https://www.facebook.com/groups/555493441175253/

We’d love to see you there 💜

15/05/2026

There are just THREE days left to respond to the Government’s consultation on proposed SEND reforms, closing Monday 18 May 2026.

This is a vital opportunity for families of disabled children and young people to help shape the future of support and inclusion.

The Disabled Children’s Partnership, representing more than 130 organisations, welcomes ambitions for earlier support and more inclusive education, but stresses that reforms must:

Strengthen support, not reduce rights
Ensure clear accountability for assessments and delivery
Fully involve health and care services
Deliver genuine inclusion in practice

Every voice matters. You don’t need to complete every question and even sharing your experience on one or two areas can make a difference.

Have your say before 18 May and help ensure the voices of disabled children, young people and their families are heard.