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 management committee of around 12 volunteers .
The main aims of the group are:
- to offer support to families and carers of those affected by Rubinstein-Taybi Syndrome (RTS); and
- to help raise awareness of RTS amongst the medical community and the general population.
It is funded almost entirely by fundraising events and voluntary donations.
In order to support families we:
- offer a telephone support network
- provide information about the condition (especially useful to families who have just received a diagnosis)
- produce a periodic newsletter
- arrange regular family get-together days and weekends
- produce and update this web site.
If you would like to join the group (there is no charge) and receive copies of the newsletters and details of family get-togethers and weekends, please contact us.
The Group started in a small way with one mum keeping in touch with other affected families 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 since then, 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 membership of over 200 families.
Amongst the management committee alone we have many collective years of experience of parenting RTS offspring, from baby to adult. We maintain close links with Prof R C M Hennekam, a Dutch geneticist who has organised and carried out research into RTS, and who continues to take a great interest in the syndrome. We are also fortunate to have Dr Adam Shaw, who runs an RTS clinic at Guy's Hospital in London, and Prof Chris Oliver and his team from the School of Psychology at the University of Birmingham, as regular attendees at our get-togethers.
We are affiliated to Contact-a-Family, the UK-wide charity providing support, advice and information for families with disabled children.
The RTS Support Group registered office is 39 Hale Road, Heckington, Sleaford, Lincs, NG34 9JN. Company number: 7866190. Registered as a charity in the UK, number 1147765.