What are the opening hours?

Monday 9am - 4:30pm Tuesday 9am - 5pm Wednesday 9am - 5pm Thursday 9am - 5pm Friday 9am - 5pm

Rett UK, Victory House, Chobham Street, Luton (2026)

04/06/2026

Family Support Outreach Worker
14–18 hours per week

Are you passionate about supporting families and making a meaningful difference? Rett UK is looking for a compassionate and organised Family Support Outreach Worker to provide practical and emotional support to people with Rett syndrome and their families.

The role involves supporting families following diagnosis and bereavement, delivering helpline services, coordinating events, and helping raise awareness of Rett syndrome across the UK.

We are looking for someone with excellent communication skills, experience working with disabled people and their families, and a commitment to Rett UK’s values and mission.

For full details of the role, responsibilities, and person specification- https://www.rettuk.org/vacancies/

All interested applicants should email [email protected] with there CV and a cover letter where possible.

Closing date – 15th July
Interview date – 28th July

Successfull candidates will need to pass a DBS check

04/06/2026

👥💬 How to be an Effective Communication Partner: Online Training Sessions 👥💬
Don't miss your chance to join our next round of Communication Partner Training sessions this spring!

Join us for our summer round of Communication Partner Training! If you've been debating starting your journey as a communication partner and looking for a sign to jump in, why not take this opportunity to join us and learn 🗣️

🗓️ Saturday 27th June; 09:00 - 13:00 AND Saturday 25th July; 09:00 - 13:00
💻 Online (links to join the sessions will be sent via email)
🔗 Register for your place now: https://forms.cloud.microsoft/e/HuHYgN6ngS
🚨 Registration closes at 17:00 on Wednesday 17th June 🚨

Over two sessions, members of our Communication & Education team will take you through ideas and activities for developing your own skills as a Communication Partner. This will include things like modelling and partner-assisted scanning, and techniques you can adapt to suit the person with Rett syndrome as their symptoms fluctuate day to day.

📚 A selection of low-tech resources will be posted to you in the week before the first session (or sent via email to non-UK attendees).

This session is suitable for parents, family and carers of, and those who professionally support people with Rett syndrome of all ages, from toddler to adult, and is a pre-requisite for any family considering joining our device loan programme.

📜 Professionals who support someone with Rett syndrome as part of their caseload are also welcome (we can provide a certificate of attendance for CPD purposes upon completion of session 2).

🚨 Please note you must attend BOTH sessions of this training. You cannot attend one without the other 🚨

If you would like to join this training, all you need to do is click on the link below to complete the registration form ⬇️
🔗 https://forms.cloud.microsoft/e/HuHYgN6ngS

Please don't hesitate to get in touch if you have any questions 💜💚

03/06/2026

Carers Week: Celebrating and Supporting Rett Syndrome Carers

Next week (8–14 June) is Carers Week, a national campaign recognising the millions of unpaid carers who provide essential support to family members, friends and loved ones across the UK. This year’s theme is “Building Carer Friendly Communities” – highlighting the importance of ensuring carers feel recognised, valued and supported.

For many families affected by Rett syndrome, caring is a 24/7 role that can be both rewarding and challenging. Carers often juggle complex healthcare needs, appointments, advocacy, education, and day-to-day support, while also trying to look after their own well being.

At Rett UK, we’re here to help.

Whether you need:

* Information and guidance through our Helpline - 01582 798911
* Support to understand and access your rights - [email protected]
* Expert webinars covering key Rett syndrome topics - https://vimeo.com/user7541037
* Helpful resources, including our Noodles educational videos - https://www.rettuk.org/noodles/
* A community that understands the realities of living with Rett syndrome

This Carers Week, we’d like to say a heartfelt thank you to every parent, sibling, grandparent, family member and friend who provides care and support to someone with Rett syndrome. Your dedication makes an extraordinary difference every day 💜

03/06/2026

📢 Calling all dads, brothers, grandparents, and any male relatives in the Rett UK community... 📢
Don't miss our next 'Rett Gents' session this Thursday 🤩

This session is taking place:
🗓️ Thursday 4th June
⏰ 20:00 - 21:00
🔗 Teams: https://teams.microsoft.com/l/meetup-join/19%3ameeting_NTExZGQxNzEtNGY2Zi00YzA4LWE3ODItYWQzNGM5Mjg2MzJh%40thread.v2/0?context=%7b%22Tid%22%3a%22e9c381c1-2782-48be-82fb-16b5359f0399%22%2c%22Oid%22%3a%22981e2606-7069-43fc-b4d1-eb644c270f31%22%7d

Following the success of our in-person Rett Gents Get Together in April, we're excited to get back online and share stories, advice and support together! Whether you're a dad who's been to our groups before or you've never joined us before - all are welcome 🌟

We appreciate that having a family member with Rett syndrome impacts not only the immediate family but also wider members (siblings, grandparents and friends), so we now encourage any male relative in our Rett UK community to come along and share your experiences and get support!

Each online call is an opportunity to share your experiences, discuss different topics and day-to-day tips, meet some of the key professionals involved with your daughters and sons, and most importantly talk to other dads, brothers, grandparents in our Rett UK community 💚

To join this session, simply click on the Teams link below:
🔗 https://teams.microsoft.com/l/meetup-join/19%3ameeting_NTExZGQxNzEtNGY2Zi00YzA4LWE3ODItYWQzNGM5Mjg2MzJh%40thread.v2/0?context=%7b%22Tid%22%3a%22e9c381c1-2782-48be-82fb-16b5359f0399%22%2c%22Oid%22%3a%22981e2606-7069-43fc-b4d1-eb644c270f31%22%7d

Any questions just comment down below!
We hope to see you there 🥳

03/06/2026

🗓️ What’s Happening at Rett UK in June 🗓️

After the lovely weather we've had over the past few weeks, it's looking like summer is officially on it's way! Let’s take some time to look at what events we've got planned at Rett UK this June 🥳

As usual we have our regularly scheduled Peer Groups and Families Together Support Meeting. Plus, this month we’ve also got the return of our Rett Gents Support Group 🤩

We'll also be starting our summer round of Communication Partner Training! If you've been debating starting your journey as a communication partner and looking for a sign to jump in, why not take this opportunity to join us and learn 🗣️

And, don’t forget you can book onto our 1:1 Virtual Communication Clinics! Information to follow with specific times and team members 🌟

More information on each event can be found on our social media channels. But for now, be sure to mark these events in your calendar so you don’t miss anything 🗓️

You can find the access links to all our events, as well as any additional support, fundraising and resources, via the link below:
🔗 https://linktr.ee/rettuk

You can also find all upcoming events on our website:
🔗 https://www.rettuk.org/upcoming-events/

Got any questions, let us know below 💜 💚

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 💜💚

Rett UK

04/06/2026

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Monday	9am - 4:30pm
Tuesday	9am - 5pm
Wednesday	9am - 5pm
Thursday	9am - 5pm
Friday	9am - 5pm