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 price of the items you buy online. The percentage…
Throughout the coronavirus pandemic The Sandcastle Trust has been more committed than ever to supporting families affected by a rare genetic condition but sadly we have had to postpone many Sandcastle Memories that involve travel. We have therefore been working hard to diversify the way that we provide fun and respite to affected families. Funding from the Coronavirus Community Support Fund, distributed by The National Lottery Community Fund, has now helped us to launch a new category of support – ‘At Home’ Sandcastle Memories. You can find out more about ‘At Home’ Sandcastle Memories and download an application form here:
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 people living with rare diseases about their level of risk…
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 condition face every day. The children and adults with genetic…
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 condition face every day. The health and wellbeing of our…
Having a family member with a rare genetic condition can sometimes be a lonely, isolating experience. Meeting with other families in a similar situation who 'understand' can be a vital avenue of support and result in lasting friendships. (more…)
The Sandcastle Trust recently collaborated with Great Ormond Street Hospital to put on a party for some families whose children are affected by a group of very rare inherited metabolic disorders called Lysosomal Storage Diseases. (more…)
The Sandcastle Trust are proud to be part of the Disabled Children’s Partnership (DCP). and together we are asking the government to give back the £434 million shortfall in funding for social care for disabled children and their families. Every…
The Sandcastle Trust is proud to have recently become a member of the Disabled Children’s Partnership – a growing coalition of more than 60 organisations – campaigning for improved health and social care for disabled children, young people and their…
On 18 December our lovely ambassador Laura Hamilton hosted a little Sandcastle Trust Christmas party for some families who have been affected by a rare genetic condition. The party was held at Laura’s coffee shop, The Lord Roberts on The…
Here at The Sandcastle Trust we believe that by working collaboratively with other rare genetic condition organisations we can achieve the greatest impact. We were pleased to help fund The Batten Disease Family Association’s recent family fun day held at…
We had a great day at the Kingston Rotary Dragon Boat Challenge. Team Sandcastle smashed it with a fastest time of 1.03.88 mins and raised over £1,700 to support The Sandcastle Trust’s work! #supersupporters
The parents of Charlie Gard will launch The Charlie Gard Foundation on 1 June with the £1.3 million raised in his name. Charlie died in July last year, a week before his first birthday due to the rare genetic condition…
Merry Christmas and a Happy New Year from The Sandcastle Trust. We believe that a little fun goes a long way, which is why this Christmas our Sandcastle Santa Campaign provided 108 families who have been affected by a rare…
The Sandcastle Trust would like to say a heartfelt thank you to Gemma and Becki. Their little girls have 1p36 Deletion Syndrome. Together they have raised over £10,000 for The Sandcastle Trust this year, an astronomical amount for a tiny…
We are looking for new trustees to join the board of The Sandcastle Trust and help us reach our vision, a future where a diagnosis of a rare genetic condition will not be a barrier to experiencing everything that life…
Brilliant night last night at The Barn Theatre. A heartfelt thank you to Naomi Cobby, Sam Hiller, Nigel Garton, James Hume, Ciaran Bowling, Adam Bayjou, Joanna Loxton, Grace Gardner, Alice Ellen Wright, Annatt Bass and Neil Shaw - the stars…
Dylan, age 5 has 4q Deletion Syndrome. His story is in the press today, raising awareness of rare genetic conditions, The Sandcastle Trust and the #jeansforgenes campaign http://www.theargus.co.uk/…/15483776.Dylan__5__can___t_sp…/…
A huge well done to Paul Stringer who completed the London Marathon in an amazing 3:27:27 and raised a phenomenal £2,895 for The Sandcastle Trust A heartfelt thankyou to Paul as despite having a ballot place he decided to raise…
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