Our Mission is to support families living with a diagnosis of a rare genetic condition, to build lasting positive family memories and strengthen their family relationships through the provision of bespoke family respite packages called Sandcastle Memories.  We increase public awareness of the needs and issues that families face when accessing social opportunities; signpost to sources of support and affect positive change through our work.

  

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 provides families affected by a rare genetic condition with bespoke packages of family respite known as ‘Sandcastle Memories.’

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.  Alternatively, we can deliver fun, memorable Sandcastle Memories within the home.

Having a family member with a rare genetic condition can sometimes be a lonely, isolating experience.  Meeting with other families in a similar situation can be a vital avenue of support and result in lasting friendships.  As the conditions are rare, affected families are often dotted around the country which means the costs and logistics can be tricky.  Therefore The Sandcastle Trust also helps patient groups hold fun family meet ups and day trips.

The Sandcastle Trust is unique in that access to our support does not stop at age 18.  We recognise that families containing a young adult or a parent with a rare genetic condition need support too.

We also offer support to families who have suffered a bereavement as a result of a rare genetic condition.

Why we do it

There are between 4,000 and 6,000 diagnosed genetic conditions (not including the thousands of people who live with an undiagnosed genetic condition).  Each diagnosed condition affects less than 0.1% of the UK’s population, but together they affect the lives of 3 million people.[1]  Collectively, therefore, they are not rare at all and the total number is increasing with developments in genetic research.

Life with a rare genetic condition can often be very bleak with little hope of a cure or effective treatments.  Some of the conditions are so rare there are often insufficient patients to participate in drug trials and in any event there tends to be a lack of appetite from pharmaceutical companies to invest in research when the market is so small.

Families containing a parent, young person or child with a rare genetic condition face significant barriers in their lives.  Our grants aim to help break down some of these barriers, ease the additional pressures that affected families face, help them create lasting positive memories and strengthen their family relationships.

[1] UK Strategy for Rare Diseases