How are we doing as a charity?

SOFT UK was established as a charitable trust in April 1991. We were set up “primarily as a support organisation for those with first hand experience of Trisomy 13/18 and related disorders”.

In common with other charitable trusts, the SOFT UK Trustees are responsible for making decisions on how to spend any donations and grant funding. These decisions are taken in line with the activities set out in the founding documents. These are, briefly, to:
- provide information and support to families with children with “chromosomal abnormality and other rare conditions”
- promote better public understanding of trisomy 13, trisomy 18 and related conditions
- promote progress in education so that children with trisomy can reach their full potential
- encourage and fund medical research in to the causes of, and cures for, trisomy
- undertake other charitable activities as determined by the Trustees

On 11th June 2016, the Trustees will be holding a development day to plan the future of the charity. We would love to hear the views of all SOFT families. Please contact for more information.

* 1. Which situation best describes when you first came to use SOFT services?

* 2. Which SOFT service did you first use?

* 3. Overall how do you rate your first contact with SOFT UK? 

* 4. How long have you continued to use SOFT services (including family events) since your first contact with SOFT?

* 5. What best describes the frequency with which you use SOFT services?

* 6. Which SOFT service/s do you use most frequently?

* 7. What key changes do you think SOFT UK should make to improve the information and support that we offer to families affected by trisomy 13, trisomy 18 and related conditions?