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 volunteer trustees .
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 and maintain a presence on social media.