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Support helpline: 01582 798911 other ways to get in contact

Volunteer With Us

2015 RETTS conference-143msmDo you have a bit of time you could spare to help us?

Rett UK depends on over 50 volunteers to carry out the work needed to support our Rett community. Just a few hours from you can make a big difference to our families.

Volunteering is a great way to give something back and can be hugely rewarding. It’s also a great opportunity to meet new people as well as to gain new skills and experience – something that can be particularly beneficial as a way of getting back into work.

We’d love you to join us because with your time and enthusiasm and our support, we can achieve great things.

Rett UK need you!


This role requires attendance at our quarterly meetings, normally held in London and some sub-committee meetings. Is it for you? Trustee JD, Person Spec & Statement of responsibilities.


Are you good at opening doors? We need Patron Role Description to help us find fundraising opportunities and facilitate partnerships with potential donors.

Do you have experience of Rett syndrome?

If you’re a parent, family member, carer or friend of someone with Rett syndrome, you’d be perfect for one of these volunteer roles:-

Regional Ambassador

Our regional ambassadors are helping us to reach more families around the UK. We’re looking for someone who can attend up to three events a year that are within an hour of where they live. Sound doable? Here’s the Regional Ambassador Role Description

Family Contact Network

Our family contact network volunteers support families by sharing their experience of Rett syndrome. Find out more 

Support Group Leader

As a support group leader you’ll be the local contact for families in your area. This involves finding a suitable venue for meetings, facilitating meetings and liaising with the Rett UK support team regarding group activities and communication. Find out more about our local support groups here.

* Full training and support is available for all volunteer roles as well as reimbursement of expenses. If you’re interested in volunteering for any of our roles or have suggestions for something else you could do to support us, please call us on 01582 798910 or email



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