This National Siblings Day (10th April), we were thrilled to honour some truly incredible brothers and sisters who go above and beyond for their siblings living with rare genetic conditions. Each nomination told the story of an extraordinary brother or…
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…
At The Sandcastle Trust, we believe that leadership is not just about strategy, governance, or boardroom decisions — it’s about heart, commitment, and leading by example. Our Chair of Trustees, Sam embodies all of this and more! This weekend, Sam…
Your chance to nominate a Super Sandcastle Mum for a Mother’s Day Treat! Mums in the rare genetic condition community are also often nurses - experts in their child's condition and care, advocates and campaigners. So, this Mother’s Day, we…
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…
We're smiling from ear to ear to announce that we are finalists at the 2025 Smiley Charity Film Awards! Our film introducing you to Ollie and Amelia that was featured as part of our 2023 Christmas Campaign has been selected…
You might have noticed that we’ve had a tiny bit of a change here at The Sandcastle Trust. Think of it as a spring makeover, a new year refresh if you like – we just wanted to fill you in…
The Sandcastle Trust’s trustees are currently working on a new exciting three year strategy which we hope, will serve as a roadmap towards the charity providing a wide range of impactful emotional well-being initiatives for families living with a rare…
I'm Laura, an NHS doctor, and mum to 6 year old Freddie. I found myself catapulted into the world of rare genetic disorders when my son was born and surprised us all with his extremely rare microdeletion syndrome. I was…
Enter our prize draw to win a week’s break in the school summer holidays at our Sandcastle Trust caravan located at Parkdean Southview Holiday Park in Skegness! We are offering the winner the week of Saturday 27th July to Saturday 3rd…
Rare Disease Day is an important international awareness day that takes place every year on 28th February (or for leap years on 29th February). This date was chosen because 29th February is the rarest day of the year. Its a…
Our friends at Disabled Living are bringing their Kidz to Adultz Exhibition to Coventry in March. Entry is free and you can discover over 100 exhibitors and learn about the latest equipment and products designed to improve the quality of life…
My name is Jess. I worked as a paediatric nurse for 20 years and I’m a mummy to three wonderful children: Daisy, Lola and Alfie. Sadly, both Lola and Alfie were born with the same ultra rare genetic condition called…
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…
Time spent together as a family creating special memories is precious, even more so during the festive season and when a loved one has a life-limiting or life-changing rare genetic condition. The family fun and respite provided by The Sandcastle…
The Sandcastle Trust are very pleased to announce that we have had a new trustee join our board. Meet Sam, a HR Director, mum to Hollie and step mum to Jude and Daisy. “My experience with genetic disorders was non-existent…
Did you know that Saturday 5 August is National Sandcastle Day? No? We had no idea it existed either, but we were very excited when we found out that it did and thought what better day to launch our 2023…
Are you interested in guiding the work of a charity who work to support the emotional wellbeing and resilience of families living with a rare genetic condition? The Sandcastle Trust has some exciting plans in the pipeline and are looking…
A huge thank you to The Desford Striders Running Club who selected The Sandcastle Trust as their Charity of the Year in 2022. The Striders decided to fundraise for The Sandcastle Trust as a thank you for the support it…
Unfortunately it has been announced that Amazon Smile, the scheme in which customers can donate 0.5% of the value of purchases to a charity of their choice, is being discontinued, officially ending on 20 February 2023. The scheme had been…
Our film ‘Oscar and Theo’s Sandcastle Memory’ is an entrant in this year’s Smiley Charity Film Awards! The Smiley Charity Film Awards is the world’s biggest campaign to promote cause-based films. It helps charities drive more views of their videos,…
There are several ways to support us this Christmas, here are some ideas: Donate to our Christmas Appeal This year families living with a rare genetic condition are being hit particularly hard by the cost of living crisis. Even before…
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…
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 such a fantastic amount to help support families living with a rare genetic condition.
This June The Sandcastle Trust hosted a virtual ‘Bake your Own’ Platinum Jubilee Family Afternoon Tea to help the rare genetic condition community come together to celebrate the Queen’s Platinum Jubilee whilst creating some fun family memories! The Sandcastle Trust…
A huge congratulations and THANK YOU to the cast of ‘A Night At the Musicals’ who bought the house down last night and raised much needed funds for The Sandcastle Trust. The concert was arranged by Thomas Hall Davidson whose…
The Sandcastle Trust walks alongside families living with a rare genetic condition to help them build lasting positive family memories, strengthen their family relationships, and improve emotional wellbeing and resilience.
Our Sandcastle Memories programme forms the core of our work and provides respite breaks to affected families.
For 12 days, from 6 – 21 December 2021, Ecclesiastical Insurance will be donating a total of £120,000 to charities. 120 lucky charities will each receive £1000 if their names are selected randomly from charities nominated by their supporters. This…
At the 2021 Spending Review, Rishi Sunak did not announce any dedicated COVID recovery, or long-term funding for disabled children’s health and care services. Several pots of non-ringfenced money were announced that could help disabled children and families. However, there…
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
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