Our Mission is to support families living with a diagnosis of a rare genetic condition, to build lasting positive family memories, strengthen their family relationships, and improve emotional wellbeing and resilience.
Our Vision is a future where a diagnosis of a rare genetic condition will not be a barrier to experiencing everything that life has to offer – most importantly enjoying life experiences and making memories as a family.
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 our four Sandcastle Support Programmes: Sandcastle Memories, Sandcastle Smiles, Sandcastle Connections and our Sandcastle Support Hub.
Through this unique service offering, consisting of bespoke family respite, wrap around fun family engagement activities and peer support, we are able to support families living with a rare genetic condition based on their individual needs from across the UK.
Our Sandcastle Memories programme forms the core of our work and provides bespoke family respite to families when a child, young dependent adult or parent is living with a rare genetic condition. We also offer respite support to families who have experienced bereavement as a result of a rare genetic condition.
There is no ‘one-size-fits-all’ approach and we work directly with affected families to ensure the respite provided is diverse and completely tailored to a family’s interests and needs. It could take the form of a short UK break or where a short break is not suitable, annual passes to attractions such as zoos, farms and steam railways or a special day trip.
The Sandcastle Smiles programme is a wraparound service, that provides regular opportunities for family fun and engagement activities within the home.
Our Sandcastle Connections programme aims to alleviate social isolation. It includes provision of tablets to improve connectedness, for example, if your family is frequently separated by hospital stays or to help with communication.
As part of this programme, The Sandcastle Trust works in partnership with genetic condition specific patient groups and small charities to hold fun family meet ups and day trips. Meeting with others in a similar situation can be a vital avenue of support for families living with a rare genetic condition and result in lasting friendships and peer support networks.
Finally, the Sandcastle Support Hub on our website contains lots of useful resources and signposting to reliable information for families who are affected by a rare genetic condition.
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.
Symptoms of different rare genetic conditions vary but can include physical disability, learning difficulty, mental health and social issues. Caring for a loved one with a genetic condition is emotionally exhausting. It impacts the whole family and as a result the families we support face significant barriers in their lives including mental health issues, relationship breakdown, isolation, financial worries, lack of opportunity and bereavement to name but a few.