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For families living with a rare genetic condition

How we support

How we Support

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The Sandcastle Trust walks alongside individuals impacted by rare genetic conditions, and their families to help support their emotional well-being and resilience.

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Why we are needed

There are approximately 6,000 rare genetic conditions. Each affects less than 0.1% of the population, but together they are one of the greatest causes of disability and early death affecting 3 million in the UK (source: National Human Genome Research Institute).

The complex challenges associated with rare genetic conditions create deep-rooted inequalities that can profoundly impact the emotional well-being of every member of the family.

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Latest News

New Counselling Service

The Sandcastle Trust is pleased to be working in partnership with Rareminds to offer a new free, confidential counselling service for individuals/couples aged 18+ living with or caring for a family member with a rare genetic condition. Six to twelve sessions can be provided either via Zoom or by telephone. Both evening and daytime appointments are available (weekdays only). Our…

The Sandcastle Trust Launches New Five-Year Strategy

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…

Summer Appeal 2025

This summer, swap your cone for a cause. Sandcastle Scoops is raising money to help The Sandcastle Trust fund a new wheelchair-accessible holiday caravan on the South Coast — a much-needed addition to our existing caravans in North Wales and Lincolnshire. Ice cream is so often associated with being away on a summer holiday — relaxing and enjoying time together with loved ones. But for…

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“Our family’s experience is where the idea of The Sandcastle Trust came from. We hope to help other families like ours who are affected by rare genetic conditions create positive family memories”

Danielle Singleton

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"Louie taught me so much during his life and how to truly love and care for someone. I will miss him every day for the rest of my life."

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"Tabby does not really play with toys, she needs 1:1 supervision and does not play independently. She hates being cooped up indoors and loves to be outside whatever the weather. She has found this winter lockdown particularly hard."

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