The Rubinstein-Taybi Syndrome Support Group is a company limited by guarantee and a registered charity. It is run on a not-for-profit basis by a volunteer management committee of Trustees. We are funded almost entirely by fundraising and voluntary donations.
The main aims of the group are:
- to offer support to families and carers of those affected by Rubinstein-Taybi Syndrome (RTS)
- to help raise awareness of RTS amongst the medical community and the general population.
In order to support families we:
- offer a telephone support network
- provide information about RTS (especially useful to families who have just received a diagnosis)
- produce and distribute information on research, social activities, medical and policy developments etc.
- arrange regular social family get-together days and weekends
- organise larger scale conferences and learning and support events
- produce and update this website and maintain a presence on social media.
If you would like free membership of RTSUK and receive news of all the above then please email us at [email protected] to request a membership form. or go to the 'Join Us' tab above.
Barbara Baron – the mum who started it all.
The UK RTS Support Group started in a small way with Barbara Baron (pictured right) keeping in touch with other families affected by RTS by telephone and letter. In 1986, a couple of families got together and started producing a newsletter and arranging annual get-togethers.
Over the years, membership has grown, links have been made with medical and psychology professionals, and events have become more sophisticated, and in 2012 we became a company limited by guarantee.
We currently have a growing membership and are in touch with over 200 families.
Our skills, knowledge and experience
Amongst the management committee alone we have many collective years of experience of parenting children and young people with RTS up to and into adulthood. We maintain close links with Professor Raoul Hennekam, a Dutch geneticist who has carried out research into RTS and who continues to take a great interest in this syndrome.
We are also fortunate to have Dr Adam Shaw, who runs an RTS clinic at Guy’s Hospital in London, and Professor Chris Oliver and his team at the School of Psychology in the University of Birmingham, as regular attendees at our get-togethers.
We are affiliated to Contact, a UK-wide charity providing support, advice and information for families with disabled children.
The RTS Support Group registered office is:
2A Coryton Rise Coryton Cardiff CF4 7EJ.
Company number: 7866190.
Registered as a charity in the UK, number 1147765.
The RTS Support Group Articles of Association are the rules to which we adhere. All new members should read these, as they govern your membership.