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 The Rubinstein-Taybi Syndrome UK Support Group is a registered charity. Its main aims 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 entirely by voluntary donations.
The Support Group is led by a management committee of around 12 members. 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.
Naturally, in order to achieve all this, we also have to undertake fund-raising activities of various kinds.
If you would like to join the group and receive copies of the newsletters and details of family get-togethers and weekends (there is no charge to join), simply email us, giving your name and postal address, or get in touch directly with any of the committee members listed under "Contact Us".
OUR ORIGINS
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, and it has developed from there. We currently have a membership of over 150 families.
OUR CREDENTIALS
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. He is a regular guest at our get-togethers, so it is fortunate for us that he has recently moved from the Netherlands to take up a post at Great Ormond Street Hospital.
Also we are affiliated to Contact-a-Family, the UK-wide charity providing support, advice and information for families with disabled children.
Registered Charity No. 1037043
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