We are working behind the scenes to create a brand new online wellbeing community for individuals and families affected by a rare genetic condition: the Sandcastle Connections Online Café.

The aim of this new online space is simple but powerful: to improve the emotional wellbeing of those impacted by rare genetic conditions by bringing them together for peer connection and wellbeing activities, delivered in a flexible and accessible way online.

The Café will offer a safe, secure and supportive space that can be accessed via our website or through an app. You will be able to choose sessions that fit your life, all designed to reduce isolation, support emotional resilience and help you build meaningful connections with others who truly understand.

What will the Sandcastle Connections Café offer?

We are still shaping the programme with community input, but our current ideas include:

  • relaxed online group chats
  • fun social sessions such as sip and paint evenings and book clubs
  • creative workshops
  • gentle wellbeing sessions such as breathing workshops and guided relaxation
  • expert-led information sessions
  • tailored “tea and chat” sessions for different groups
  • physical activity sessions such as mindful movement, Pilates, stretching and chair-based exercise

We understand how complex life can be, and how difficult it can feel to carve out time for your own wellbeing. Choose what you join, when you join – whether you are at home, at hospital with your child, or simply grabbing a moment for yourself whenever you can.

We will also be bringing our existing Sandcastle Connections (family matching support) and Family Spotlight stories into the Café. This will allow families to connect directly with others who share the same diagnosis or who are experiencing similar challenges.

Who will it be for?

The Sandcastle Connections Café is being created for adults affected by rare genetic conditions in different ways, including:

  • adults living with a rare genetic condition themselves
  • parent carers of young children with a rare genetic condition
  • parent carers of teenagers or dependent adults with a rare genetic condition
  • partners or spouses of adults living with a rare genetic condition

Initially, the online platform and sessions will be open to adults aged 18 and over only. If this model works well, we hope to widen the scope in future, and potentially offer specific age-appropriate opportunities for younger people and siblings too.

Help shape the Sandcastle Online Connections Café

We want to build this with you.

Because rare genetic conditions are so diverse, we want to ensure this space meets the needs of as many people as possible. We are therefore running one online Steering Group session (offered at two different time options so more people can attend). We will then follow up by email for any additional thoughts.

We would especially value your input on:

  • what types of workshops or activities would be most helpful
  • what times of day you could realistically attend
  • what would help make this space inclusive, welcoming and safe

As a thank you for your time and sharing your thoughts, everyone who attends the online Steering Group session will receive a £30 LovetoShop voucher.

Interested in being part of the Steering Group?

If you can spare a little time to help shape the Sandcastle Online Connections Café, please complete this short form and we will be in touch in the next couple of weeks with the two date and time options.

 

This project is funded by The National Lottery Community Fund – thank you to National Lottery players for making it possible.