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 supports people of all ages living with a diagnosis of a rare genetic condition, to build lasting positive family memories and strengthen their family relationships, through the granting of Sandcastle Memories.
Become part of Team Sandcastle and raise money to help us support families affected by rare genetic conditions.
Whether you'd like to attend a fundraising event organised by The Sandcastle Trust, take on a sporting challenge or fundraise for us in some other way, you can find out more here:
“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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“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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“The fact the Sandcastle Trust organises breaks for families of adults as well as children is really important. You don’t stop caring when your child reaches 18.
“The trip was something we will always remember away from the chaos of everyday life, a chance to really be a family.”
Feeraz Begum, Sannah's Mum
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"Henry goes through so much day to day and the isolation following his impending bone marrow transplant will be incredibly challenging, to have lots of happy family time together now is a brilliant gift. We simply would not have been able to do this without the Sandcastle Trust and are forever grateful for them for their help and support."
Zoe Alderson, Henry's Mum
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"The Sandcastle Trust is an amazing charity. It is a small one but they make such a difference to the families they support. "
Claire Biney, Alisia's Mum
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