The Sandcastle Trust’s trustees are currently working on a new exciting three year strategy which we hope, will serve as a roadmap towards the charity providing a wide range of impactful emotional well-being initiatives for families living with a rare genetic condition. We want to ensure that The Sandcastle Trust’s work is led by you and that your voices are at the centre of all that we do. For example, we have recently launched a counselling service as a direct result of your feedback.
By completing our survey you will be directly contributing knowledge about the day to day emotional impact of living with or caring for a loved one with a rare genetic condition. We want to know the good, the bad, and the ugly! Some of the questions are quite personal and we appreciate that some people may not feel comfortable answering them. That’s fine! Any insights you feel able to contribute will be incredibly helpful.
We will use the findings to influence the design of the new strategy, identifying priority areas where services need developing to make a real difference to the lives of those living with a rare genetic condition and their families, both now and in the future.
Our survey will take approximately 10 minutes to complete and closes on the 1 June 2024. As a thank you for taking part, you will be entered into a prize draw to win a £50 Amazon voucher.
If you have any questions or would like to speak to the team about the survey please contact us at info@sandcastletrust.org we are always happy to help.
Thank you in advance for your time.
