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For families living with a rare genetic condition

How we support

How we Support

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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 life experiences and making memories as a family.

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How We Help

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

Many are life-limiting, all are life-changing.

The Sandcastle Trust walks alongside families living with a rare genetic condition to help build lasting positive family memories, strengthen family relationships, improve emotional wellbeing and resilience.

Thank you to Danehill Primary School!

A big THANK YOU to the wonderful pupils of Foxes class at Danehill Primary School. They held an art exhibition based on their topic this term which has been their heroes. They then priced their artwork to sell to their parents and raise funds towards The Sandcastle Trust's Holiday Home Appeal. Well done for producing such beautiful artwork and raising…

Fundraising Superstars!

A heartfelt THANK YOU to these fundraising superstars who recently took on the Cycle Active Coast to Coast to raise much needed funds for The Sandcastle Trust. They covered 143 miles over 3 days travelling from Whitehaven to Tynemouth taking on some of the highest passes in the Lake District! They raised an incredible £4,450 to help us provide much…

Thank you to our 2021 London Marathon runners

The Sandcastle Trust had 2 amazing runners in the London Marathon on Sunday; Paula and Matt. 4 marvellous runners; Jenny, Bethany, Brett and Coral also completed the marathon virtually in their local areas The effort these 6 incredible supporters put in to this challenge was outstanding: long days of training, fundraising and raising awareness for families living with a rare…

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Royal Parks Half Marathon 2023

We have the opportunity to take part in the 2023 Royal Parks Half Marathon and we would love you to join Team Sandcastle for this...

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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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“It was really easy to apply to the Sandcastle Trust and they were so lovely to deal with. The whole process removed any stress – which is brilliant when you are looking after a profoundly disabled child.”

Ilmarie Braun, Eddie's Mum

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“It was the most memorable couple of days. It was time away when could we feel like a “normal” family - we could forget the medical side of our lives and the constant fighting for Maddison.

“We felt so grateful the children could experience London and have fun.”

Lidia Sherwood, Maddison's Mum

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“We were fortunate enough to be offered complimentary tickets on a Polar Express train ride for us all via the charity. We had a wonderful evening….Rare genetic conditions can be extremely difficult to deal with as are all disabilities, but having the cherished moments to look forward to and refer back to is a wonderful gift. Such a simple idea, but so powerful!”

John & Julie Davidson

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“Vinnie enjoyed the day out so much,” Kelly recalls. “It was lovely to make memories as a family. Vinnie loves to go out for the day. He enjoys theme parks, fairgrounds, the zoo and woods. He is a real outdoors kid. On the whole he is a happy little boy.”

Kelly Harrison, Vinnie's Mum

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“When we approached the Sandcastle Trust we knew our three boys might not have long together. The organisers said they would be able to arrange an autumn half term break but when we explained Reuben might not live that long, they pulled out all the stops to sort a holiday cottage in August, 2021. I will always be grateful for that.”

Sophie Byrne, Reuben's Mummy

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