The Sandcastle Trust provides families affected by a rare genetic condition with opportunities for family fun and respite to help them build positive memories, strengthen their family relationships and improve emotional wellbeing and resilience. Our support is delivered through our four support programmes:

  • Sandcastle Memories – family respite service
  • Sandcastle Smiles – family fun and engagement
  • Sandcastle Connections – reducing insolation and building a supportive rare genetic condition community
  • Sandcastle Support Hub

You are eligible to register as a Sandcastle Family to access The Sandcastle Trust’s support if an individual (or individuals) in your family have been diagnosed with a rare genetic condition that affects less than 5 in 10,000 of the general population, and that condition has had an enduring impact on family life.   Please see our FAQs for more details on our support and our full eligibility criteria.

We ask that you register with us as a Sandcastle Family so that we can try to better understand the needs of families in our rare genetic condition community, identify gaps in provision, shape our support and keep you up to date with what we are up to.  This form is not an application form.  If you would like an application form for one of our services, please email us at to request that one is sent to you.

By completing this registration form, you are consenting to The Sandcastle Trust processing the information that you provide and retaining it on our database.  Please be assured that we hold all personal data securely and confidentially.  Your data will not be shared with any third party and you can request to be removed from all/or part The Sandcastle Trust’s services at any time.