There are approximately 6,000 diagnosed genetic conditions. Each affects less than 0.1% of the UKs 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.

Since 2014 The Sandcastle Trust has been walking 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.

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.

Since 2014 we have supported hundreds of families in this way and the impact is not short lived. A family respite break can help carers to maintain their quality of care and generally provides a positive focus which can empower families with a new enthusiasm and strength to deal with the often ongoing daily struggles of illness, gruelling hospital treatment and sometimes a devastating loss.

However, it is getting harder. The cost of UK based short breaks has rocketed since the pandemic and our waiting list is getting longer and longer. It has become clear that in order to continue to meet the high demand for our family respite service, we need to try and purchase our own accessible holiday lodge/static caravan.

This will be a mammoth task for a small, volunteer charity like The Sandcastle Trust, which is why we are asking for your help!

This campaign page will be the central hub for our holiday home fundraising appeal, you can make a donation or if you would like to take on a challenge, run your own fundraiser, or set up an 'in memory' page in support of our holiday home appeal you set up your own fundraising page and attach it here - just let us know if you need any help with this!

Every penny donated will take us a step closer to our target but for those that donate/fundraise £1,000 or more, their name (or an 'in-memory name) will be displayed on a plaque in our new holiday accommodation.

To find out more about The Sandcastle Trust and how we support families living with a rare genetic condition, visit our website at www.sandcastletrust.org

Thank you xx