News

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

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

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

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

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

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

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

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

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

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

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

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

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

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,

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

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

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

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

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

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

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

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

Looking to get rid of your clutter? Then why not donate to The Sandcastle Trust whilst doing so! By decluttering your home, you can donate your unwanted books, games, CDs

Make your online Christmas shopping clicks count this year! We’ve partnered with two popular fundraising schemes Amazon Smile and EasyFundraising – that support UK charities by donating a percentage of

The Sandcastle Trust are very pleased to announce that we have had a new trustee join our board – Meet Mina.

A new interactive online patient tool has been developed to help people with rare diseases better understand their risk of Covid-19. There has been considerable anxiety and confusion among many

The current coronavirus pandemic is a challenging and uncertain time for everyone and is a real insight into the isolation, vulnerability and anxiousness that families affected by a rare genetic