There are more than 6,000 genetic conditions. Together they are one of the greatest causes of disability and early death, affecting three million families in the UK. Many are life limiting, all are life-changing, often requiring frequent hospital visits and 24 hour care. Parents, husbands and wives often become full time carers.
Families face significant barriers in their lives once diagnosed. As well as day-to-day health issues these can include: mental health problems, relationship crisis or breakdown, impacted siblings, isolation, financial worries due to one parent or spouse having to give up work to care, lack of opportunity and bereavement.
Each condition affects less than 0.1% of the UK's population, so despite the high occurrence of genetic conditions, to be diagnosed can mean feeling isolated and alone.
The Sandcastle Trust provides families with 'Sandcastle Experiences' - special days out, short holidays and attraction passes, because we believe that making positive memories helps strengthen family relationships and enables families to better deal with the emotional strain of being diagnosed with a rare genetic condition or caring for a loved one with a diagnosis.
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+44 (0203) 176 6862
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