Our Vision is a future where every family in the UK impacted by a rare genetic condition will have access to high-quality services to support their emotional wellbeing and resilience.
Our Mission is to reduce inequalities in emotional wellbeing outcomes for families living with a rare genetic condition. We walk alongside families helping to strengthen and nurture emotional wellbeing through a range of services that build positive family memories, strengthen family relationships, reduce isolation and improve resilience.
We also increase public awareness of the inequalities and barriers to emotional wellbeing that families living with rare genetic conditions face and advocate for positive change.
Why we are needed
There are approximately 6,000 diagnosed genetic conditions. Each affects less than 0.1% of the population, but together they impact the lives of 3 million people in the UK (source: National Human Genome Research Institute) making them far less ‘rare’ than they might seem. Collectively, they represent one of the most significant causes of disability and early death.
Rare genetic conditions are caused by changes in an individual’s genetic makeup. These changes may be inherited (in which case multiple members of the same family can be impacted) or happen randomly. Some genetic conditions are apparent at birth, while others are diagnosed throughout childhood, and sometimes into adulthood. Depending on the type of rare genetic condition, it may result in physical disabilities (for example, Ataxia Telangiectasia and Spinal Muscular Atrophy) and/or learning disabilities (for example, Angelman Syndrome and Williams Syndrome) and/or sensory disabilities (for example, Norrie Disease or Usher Syndrome which both cause severe eyesight and hearing impairment). Despite the variety in symptoms and experiences, many people living with these conditions face similar challenges in accessing appropriate care and support.
No one can be prepared for the overwhelming and devastating diagnosis of a rare genetic condition and the journey that follows is emotionally demanding. It can involves low mood, anxiety, emotional exhaustion, and has the potential to trigger thoughts of hopelessness or suicidal ideation.
There are other invisible disadvantages too – like financial challenges, negative attitudes and discrimination, barriers to work and education which then compound these feelings further.
The Sandcastle Trust is dedicated to ensuring that no family has to face this journey alone.
We walk alongside families living with the challenges of a rare genetic condition, breaking down barriers, strengthening and nurturing emotional wellbeing and resilience.
