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.  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 time together as a family.

 

 

We believe 
  1. That families matter.  We put the whole family at the heart of our grant making.  This is because we recognise the profound impact that a child, young adult or parent being diagnosed with a rare genetic condition will have on the whole family.   Although the features of specific genetic conditions differ hugely, the impact on the family lives of those affected are often similar and it is a sad reality that the physical, emotional and financial strain can often tear families apart.
  2. That a little bit of fun goes a long way.  There is a significant body of academic research that highlights the positive impact that spending fun, quality time together as a family has on health, wellbeing, happiness and quality of life.  The benefits of a special day together or a simple break away are not short lived, they can offer holistic respite for the whole family, improve mental health outcomes and reduce stigma and social isolation.

These core beliefs are the driving force behind what we do.

 

What we do

We provide grants to families affected by a rare genetic condition for short breaks, special days and annual attraction passes.

The Sandcastle Trust is unique in that access to our grants 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.

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.  The Sandcastle Trust helps patient groups hold fun family meet ups and day trips.

 

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