Rett UK is the only UK charity that provides professional support to people living with Rett syndrome across the UK.
Rett UK was founded in 1985 around a kitchen table by Yvonne Milne MBE. Since then we have grown to be the leading provider of information to not only families but also medical professionals new to the world of Rett syndrome.
Our purpose…
Rett UK is a national charity dedicated to supporting and empowering people with Rett syndrome and their families.
Our strategic aims are to …
- provide professional family-support services, activities and events at a local, regional and national level
- educate health, social care and education professionals about Rett syndrome to enable quicker diagnosis and improved standards of care throughout the UK
- advocate for people with Rett syndrome to be given the support and resources needed to be active communicators
- promote, support and encourage research into new therapies and treatments for Rett syndrome
Our vision…
That everyone with Rett syndrome is given every possible opportunity to achieve their individual potential so that they may live their life to the full.
We are a small team working on a national level. We receive NO government funding and rely entirely on donations and grants to fund our work. In July 2020 we were delighted to be awarded The Charity Excellence quality mark which demonstrates our commitment to excellence in all areas, including maximising impact, delivering value-for-money and keeping everyone safe.
Download our Rett UK General Information Leaflet to learn more about our work and how you can help.
Annual General Meetings and Accounts
Save the date for our virtual AGM on Saturday, 19th September 2026, 12:00 pm to 12:30 pm, using Microsoft Teams.
Join the AGM from your computer, mobile app or room device via Microsoft Teams – Join the meeting here
Join us:
https://teams.microsoft.com/meet/377349444959982?p=bFsgry2Giv1J7EvoPv
Meeting ID: 377 349 444 959 982
Passcode: A5vS2ev9
Please click on the links below to view the relevant documents:
The Directors resigning this year are:
- Debbie Cavaldoro
- Dolores Cowburn
- Pauline Bardon
- Romi Löffler
- Stuart Ledger
Of these, Stuart Ledger and Debbie Cavaldoro have indicated their willingness to continue in post and, upon recommendation of the Board, are seeking re-election:
Stuart Ledger – Treasurer
Stuart joined the board in January 2019. He has two daughters; his youngest daughter has Rett syndrome. Stuart is the Chief Financial Officer at Affinity Water and has significant experience in finance and utilities. He has held a number of senior finance roles, most recently as Chief Financial Officer for Retail at Thames Water. Before joining Thames Water in 2008 as the Group Financial Controller, he was the Financial Controller at Wolseley and started his career at EDF Energy. Stuart is a director of Landlord Tap Limited, which provides a website for landlords and managing agents of residential properties to provide water companies with details of those responsible for the payment of water and/or sewerage charges for their tenanted properties. Stuart has a BA from Liverpool John Moores University, is a Chartered Accountant, and is a member of the Pensions Management Institute.
Debbie Cavaldoro
Debbie joined the board in September 2023. She comes from a communications background and has spent more than ten years in the maritime sector. Initially working in shipping supporting seafarers’ rights, she moved to the ports sector in 2021 as the Chief Executive of Port Skills and Safety. This professional membership association is focused on improving safety and skills in the UK ports sector. Debbie is very proud to have become a champion for increasing diversity and inclusion in the maritime sector. She is also a charity trustee for The Seafarers Charity and two other charities. A family friend’s daughter has Rett syndrome.
Dolores Cowburn, Pauline Bardon and Romi Löffler are not seeking re-election. They leave the Board with our gratitude for their work as Directors of the charity.
The Board may bring other names forward at the AGM to serve as Directors of the charity. Further applications to serve as directors of Rett UK are also welcome, so long as they are received in writing not less than 14 days before the AGM (i.e. by noon on Friday 4th September 2026), signed by a Trustee Member entitled to vote at the meeting and providing the details necessary, if appointed, to be recorded in the Charity’s register of Directors. An application can be made here.
Rett UK has a comprehensive list of policies and procedures, which are reviewed and updated regularly by the trustees.
Rett UK Safeguarding Children, Young People & Vulnerable Adults Policy >>
If you would like to view any of our policies or procedures please email [email protected] with your request.
You may wish to refer to our Rett UK Confidentiality and Information Sharing Policy to understand more about this important area.
