We were recently contacted by The Sandcastle Trust, highlighting the services they can provide to rare families just like us! Their mission is to reduce inequalities in emotional health and wellbeing outcomes for families living with a rare genetic condition by providing tailored services that build family resilience, foster connections, and create lasting positive memories.

Their services include the following to UK-based families:

Sandcastle Counselling Service: Run in partnership with Rareminds, this service provides free counselling sessions to any individual impacted by a rare genetic condition either themselves or those caring for a loved one. We can also offer couples counselling via this service.

Sandcastle Memories Family Respite Service: Giving families the opportunity to spend quality time together and create lasting positive memories – we own two wheelchair adapted caravans providing free breaks to our families, one in Brynteg North Wales and one in Skegness.

Sandcastle Smiles Service: Creative and sensory home-based activities that families can enjoy together to strengthen relationships.

Sandcastle Connections: Helping to alleviate social isolation through peer support networks within the rare genetic condition community.

Useful links if you wish to contact them or find out more: register with them, apply for respite opportunities (usually in the form of a short break or day trip), apply for counselling or look at the support they can provide/signpost.