Our Mission is to reduce inequalities in emotional health and wellbeing outcomes for families living with a rare genetic condition.  Our services help to build positive family memories, strengthen family relationships, reduce isolation and improve resilience.

We also increase public awareness of the inequalities and barriers to emotional health and wellbeing that families living with rare genetic conditions face and affect positive change through our work.


What we do

The Sandcastle Trust walks alongside families living with a rare genetic condition to help them build lasting positive family memories, strengthen their family relationships, and improve emotional wellbeing and resilience.

We do this through various Sandcastle Support Services. Through this unique service offering, consisting of bespoke family respite, wrap around fun family engagement activities, counselling, peer support and information we are able to support families living with a rare genetic condition based on their individual needs from across the UK.

Why we do it

There are approximately 6,000 diagnosed genetic conditions. Each affects less than 0.1% of the UK’s population, but together they are one of the greatest causes of disability and early death and affect the lives of 3 million people in the UK (source: National Human Genome Research Institute). Collectively, therefore, they are not rare at all.

Many genetic conditions are life-limiting, all are life-changing.



The diagnosis of a rare genetic condition is psychologically and emotionally challenging not just for individuals, but their whole family.

Depression, anxiety and feelings of isolation, grief and helplessness are common.

The socio-economic disadvantages faced by many families living with a rare genetic condition such as financial challenges, negative attitudes and discrimination, barriers to work and education then compound these feelings further.

We work to break down these barriers and support an improved sense of emotional wellbeing moving forward.