The London Landmarks Half Marathon is back for its fourth year! We would love you to join Team Sandcastle for this event! Please email us at info@sandcastletrust.org to register your interest.
The Sandcastle Trust walks alongside individuals impacted by rare genetic conditions and their families, offering services that support emotional wellbeing and resilience, reducing the risk of poor mental health.
Why we are needed
There are approximately 6,000 rare genetic conditions. Each affects less than 0.1% of the population, but together they are one of the greatest causes of disability and early death affecting 3 million in the UK (source: National Human Genome Research Institute).
The complex challenges associated with rare genetic conditions create deep-rooted inequalities that can profoundly impact the emotional wellbeing of every member of the family.
How Sandcastle Trust Helps
The Sandcastle Trust is here so people living with rare genetic conditions, and their families, don't have to face their journey alone.
We're not just here for the difficult bits – we also create opportunities for connection, hope and moments of joy, and a chance to breathe along the way.
Support: Counselling & wellbeing
Our free, confidential counselling service offers a safe space to talk about whatever your struggling with. Whether it’s anxiety, low mood, relationships, identity, difficult symptoms, treatment or worries about the future, our counsellors understand the particular emotional impact of living with a rare genetic condition, or caring for a loved one that does. As one parent told us: “It’s not just talking, it’s been a lifeline.”
Connect: The Rare Café
An online community where people living with rare genetic conditions, and the people navigating life alongside them, can connect with others who truly get it. It’s a place to chat, share experiences, find people with the same diagnosis or similar experiences, and access wellbeing tools, resources, events and activities – helping people feel less alone and more supported.
Find your way: Signposting
When you’re living with a rare genetic condition, knowing where to turn for help isn’t always easy. There may be practical, financial, emotional or health-related challenges to navigate, but finding the right information or support can feel like another job to take on. Our Signposting Hub brings together useful information, organisations and sources of advice and practical support – including recommendations and things The Rare Café community has discovered along the way.
Get Involved
There are many ways to support us. Whether you choose to donate, take part in an event, spread the word, or volunteer your time, your support helps individuals and families who are navigating life with a rare genetic condition to feel emotionally well and resilient.
Take part in an event for Sandcastle Trust
Royal Parks Half Marathon 2027
Join Team Sandcastle at the Royal Parks Half Marathon 2026! This highly sought-after half marathon is set in the heart of central London's stunning surroundings. Renowned as one of the most picturesque half marathons in Britain, it offers a unique…
Find a Local Challenge Event
Find a local challenge event.
Latest News
New Counselling Service
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 sessions can be provided either via Zoom or by telephone. Both evening and daytime appointments are available (weekdays only). Our…
The Sandcastle Trust Launches New Five-Year Strategy
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 been committed to helping families create joyful, lasting memories through meaningful family respite breaks. Now, shaped by the experiences and…
Relax and Explore Jersey: FREE Accessible Family Holiday Opportunity
We are delighted to share details of a wonderful opportunity for a family living with a rare genetic condition. Maison des Landes Accessible Hotel in Jersey has generously donated a five-night family holiday for four guests on a half-board basis, to be taken between 22nd and 30th May 2026. This generous break includes two rooms for up to a maximum of four guests: One…
Featured Stories
Our Story
“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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Christopher’s Story
“We went to the pier, went to the market and sat on the promenade. It wasn’t crowded on the pier and Christopher loved that, as he could drive his wheelchair easily and feel free. For us, it was a much need break."
Jean, Mum to Christopher
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Archie’s Story
“We had a fantastic holiday in June, it helped us as a family massively. It gave us a chance to slow down and spend quality time together. Looking after a child with a genetic condition is a financial strain too and this year we just wouldn’t have been able to afford a holiday".
Paige, Archie’s Mummy
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Harry’s Story
"Now I can find the hope, see the small milestones and appreciate them and see how fortunate we are. I am so grateful to The Sandcastle Trust for the counselling sessions."
Beth, Mummy to Harry
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Ruairi’s story
“Going to Centre Parcs has had a huge impact on Ruairi’s wellbeing. He came back so happy and wanting to tell us all about it. He gets on so well with his carers – they can have a laugh. The break really lifted his mood and had a positive effect on his mental health."
Deirdre, Ruairi's Mum
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Noah’s story
Christie describes the grief she felt after her son Noah, now aged one, was diagnosed with a rare genetic condition at seven months old, and how counselling, provided by The Sandcastle Trust, has given her and husband much needed emotional support and coping strategies.
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Ivan’s story
"One third of Ivan’s life has been spent in pain and distress, with many hospital stays. It is horrible and it is hard to go through, but to see Ivan feeling better and having fun was just brilliant.”
Elissa, Mum to Ivan
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Florence’s Story
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Louie’s Story
"Louie taught me so much during his life and how to truly love and care for someone. I will miss him every day for the rest of my life."
Natalie, Mummy to Louie
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Elijah’s story
“I broke down in tears when I heard we had been granted the holiday. After all the assessment and diagnosis, we had gone through a rollercoaster of emotions, for the Sandcastle Trust to say you can get away, have a break from the hospital appointments and take a step back and just be a family, was such a blessing for us all.”
Becky, Mummy to Elijah
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Contact Us:
0207 1998 261
info@sandcastletrust.org
