News

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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