Our Mission

The Sandcastle Trust’s mission is to reduce inequalities in emotional health and wellbeing outcomes for families living with a rare genetic condition. Our services help to build positive family memories, strengthen family relationships, reduce isolation and improve resilience.

We also increase public awareness of the inequalities and barriers to emotional health and wellbeing that families living with rare genetic conditions face and affect positive change through our work.

How We Help

There are approximately 6,000 diagnosed genetic conditions. Each affects less than 0.1% of the UK’s population, but together they are one of the greatest causes of disability and early death and affect the lives of 3 million people in the UK (source: National Human Genome Research Institute). Many are life limiting, all are life-changing.

Significant challenges to positive emotional health and wellbeing are likely to present themselves to individuals diagnosed with a rare genetic condition and their family members. The Sandcastle Trust walks alongside families living with a rare genetic condition offering a range of impactful emotional health and well-being initiatives.

Get Involved

Become part of Team Sandcastle and raise money to help us support families affected by rare genetic conditions.

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Upcoming Events

The London Landmarks Half Marathon 2025

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.

Wishing the very best of luck to our wonderful Chair of Trustees, Sam who is running the @royalparkshalf tomorrow to raise vital funds for The Sandcastle Trust 🏃‍♀️🏃‍♀️🏃‍♀️ If you would like to contribute to Sam’s fundraising page you donate here 👉https://sandcastletrust.enthuse.com/pf/samantha-crouch
@littlepickle12
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8 year old Charlie lives with a rare genetic condition called MECP2 duplication syndrome. In September he and his family enjoyed a Sandcastle Memory respite break in an accessible lodge in beautiful Cornwall. This break was donated by one of our corporate supporters, @disabled_holidays and we cannot thank them enough and all the wonderful accessible property owners who choose to donate breaks to us for the benefit of families living with a rare genetic condition 🧡 ...

Living with a rare genetic condition or caring for a family member that does is emotionally challenging. Fighting for services, managing extra costs, carer burnout, experiencing stigma and prejudice as well as coming to terms with life being different from how we expected can all take their toll on our mental health. This #mentalhealthawarenessday we want to remind all our Sandcastle Families, if you are struggling please reach out to our free counselling service: https://sandcastletrust.org/how-we-support/counselling-service/ ...

The Sandcastle Trust’s mission is to reduce inequalities in emotional health and wellbeing outcomes for families living with a rare genetic condition. Our services help to build positive family memories, strengthen family relationships, reduce isolation and improve resilience.
You can find out more about the support we offer on our website: https://sandcastletrust.org/how-we-support/ (Link in bio).
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There’s a free and easy way to support The Sandcastle Trust from home, and it starts with easyfundraising!

Turn your online shopping at over 8,000 retailers into free donations. All your favourite retailers are available to shop with, so why not sign up?

Plus, every new supporter is a chance for us to win one of ten £300 donations! Not only that, but when you go on to raise £5, easyfundraising will double it.

Join today here: https://join.easyfundraising.org.uk/sandcastletrust/8WTNCT/c2s/WxJvtxI9/CE969/facebook/ (Link in our Linktree).
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The Sandcastle Trust Lottery! Sign up today ⭐ From only £1 a week to play, you will be helping our work supporting families living with a rare genetic condition to continue, as well as having a chance to win up to an amazing £25,000!
You can sign up here: 👇https://allweatherslottery.com/sandcastle-trust/ (link also in bio)
Please share this post with your friends and family and comment below to let us know if you sign up! Thank you 😊
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🌞 Seaside holidays are the stuff of dreams - sand between your toes, waves in the distance, and memories that last a lifetime. Thanks to our amazing supporters, we’ve got a two accessible caravans ready to give families facing the challenges of living with a rare genetic condition a much-needed break by the sea. But here’s the catch: we need £10,000 a year to keep each of them running. Let’s make sure these magical moments never have to stop. 🌊🏖️

Help us keep the smiles coming ➡️ Donate Here 🌟 https://sandcastletrust.enthuse.com/cf/the-sandcastle-trust-summer-appeal-2024

#SandcastleTrust #SeasideSanctuary #FamilyMemories #KeepTheMagicAlive
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🌞 There’s nothing quite like the magic of a seaside holiday, especially when life has been throwing you stormy weather. Thanks to you, we’ve now secured a second accessible caravan where families dealing with serious illness as a result of a rare genetic condition can find a bit of peace and joy. But to keep this escape available year after year, we need £10,000 annually for running costs. Imagine the smiles, the laughter, the pure joy that your support can sustain. 🏖️

Be a part of these ongoing moments of happiness. Every donation counts in keeping the magic alive. Please consider donating today ➡️ https://sandcastletrust.enthuse.com/cf/the-sandcastle-trust-summer-appeal-2024

#SandcastleTrust #KeepTheJoyFlowing #FamilyTime #SeasideMagic
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🌞 Ready to refresh your wardrobe and make a difference? Our new collab with Teemill brings you stylish, sustainable merch that’s as good for the planet as it is for your soul. Each piece is crafted from organic fabrics, printed with renewable energy, and includes a donation to The Sandcastle Trust. So every time you wear it, you’re spreading a little more kindness in the world. Fashion with heart—what’s not to love? 💚

Join the movement and shop the collection today ➡️ the-sandcastle-trust.teemill.com (Link in our Linktree).

#EcoFashion #WearYourSupport #SustainableStyle #SandcastleTrust #Teemill
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🌞 Imagine this: toes in the sand, the sound of waves gently lapping at the shore, and the biggest grins on little faces. Thanks to your amazing support, we’ve now secured a second accessible caravan that will give families living with a rare genetic condition the chance to create unforgettable memories by the sea. But we need your help to keep the sunshine rolling! We’re raising £10,000 to cover its annual running costs, so families can continue enjoying these precious moments. Because everyone deserves a slice of seaside magic. 🌊🏖️

Help us keep this dream alive ➡️ https://sandcastletrust.enthuse.com/cf/the-sandcastle-trust-summer-appeal-2024 🌟 (Link in our Linktree).

#SandcastleTrust #MakeMemories #RespiteHolidays #KeepTheMagicGoing
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** Late Summer Sandcastle Caravans Availability** Do you live with or care for somebody with a rare genetic condition and are not restricted to school holiday dates? Our Sandcastle Trust caravans on the Brynteg Country and Leisure Retreat in North Wales and the Southview Holiday Park in Skegness have some limited availability left in September and October for one week or long weekend breaks. The caravans have two bedrooms, an accessible wet room and ramped access. Breaks are free (including passes) for families who have not had a Sandcastle Memory break before. For those that have already had a free break, you can rent our caravans for a heavily subsidized rate. Please email us at info@sandcastletrust.org if you would like to apply and we will send you an application. ...

The Sandcastle Trust’s mission is to reduce inequalities in emotional health and wellbeing outcomes for families living with a rare genetic condition. Our services help to build positive family memories, strengthen family relationships, reduce isolation and improve resilience.
You can find out more about the support we offer on our website: https://sandcastletrust.org/how-we-support/ (link in bio).
...

A little tour of our new Sandcastle caravan at @brynteg_retreat in North Wales all ready for its first guests this summer ☀️ We do not have a hoist, changing bench or shower chair in this caravan but all can be hired locally and delivered prior to a stay. Family respite breaks are just one of the services we offer to families living with a rare genetic condition. You can register to access our services on our website here 👉 https://sandcastletrust.org/how-we-support/register-as-a-sandcastle-family/ ...

Our free, confidential counselling service is available for anyone 18+ based in the UK who is impacted by a rare genetic condition. You may have a diagnosis yourself or care for a loved one that does. We can also provide couples counselling via this service. 6 - 12 sessions can be provided free of charge, either via Zoom, or by telephone with both evening and daytime appointments available.

The Sandcastle Trust’s Counselling Team are all experienced therapists who have undertaken additional training in Counselling for rare genetic conditions. The Sandcastle Trust’s Counsellors provide a safe, confidential relationship to work through difficult thoughts or feelings, think about options that are open to you, and explore new ways of approaching challenges you are facing. Sessions are currently available.

If you would like to arrange an Initial Consultation, please contact Lead Counsellor (David) on david@rareminds.org marking your email ‘The Sandcastle Trust Counselling’.

More information is available on our website: https://sandcastletrust.org/how-we-support/counselling-service/ (link also in our Linktree).
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