Exciting news! We are proud to announce the launch of The Sandcastle Trust’s new five-year strategy — marking an important evolution in our mission to support families living with rare genetic conditions.
Since the beginning of The Sandcastle Trust, we’ve been committed to helping families create joyful, lasting memories through meaningful family respite breaks. Now, shaped by the experiences and insights shared by the families we support, we are expanding our approach.
Our new strategy will help us work towards offering a broader range of services, designed not only to brighten individual moments but to provide lasting emotional wellbeing support at every stage of a family’s journey with a rare genetic condition.
This renewed focus is rooted in the findings of an extensive survey carried out throughout 2024. We want to express our sincere thanks to all our community members who generously shared their stories and experiences with us. Their honest and open feedback revealed the profound emotional strain that families face, often hidden behind the daily practicalities of managing a rare genetic condition. 84% of respondents reported struggling with their mental health; 87% felt isolated; 93% experienced significant stress; 75% felt unsupported in their caring role; 94% suffered from anxiety; and 71% were concerned about the mental health of young people in their family, especially those taking on caring responsibilities.
Living with a rare genetic condition, or caring for someone who does, affects far more than just physical health. It reaches into every aspect of daily life — shaping identity, straining relationships, influencing education, employment, and finances — and leaving many families to cope with the emotional burden alone. Words like trapped, useless, emotional pain, loneliness, uncertainty, and suicidal appeared time and again in the responses, painting a powerful picture of the challenges faced. These voices have inspired us to widen our mission. Our new strategy is about more than creating special memories — it’s about building a foundation of ongoing emotional wellbeing support that helps families strengthen their resilience, reduce isolation, and feel empowered as they navigate the complexities of life with a rare genetic condition.
We are excited to begin this new chapter and look forward to sharing more about the work ahead as we continue to walk alongside families impacted by rare genetic conditions. You can read our new strategy in full here.
