The Rare Café is an online peer support and wellbeing community for people living with rare genetic conditions and their families.
Grab a coffee or a cuppa, pull up a chair, and welcome to The Rare Cafe!
If you’re living with a rare genetic condition, or supporting someone who is you’ll know this journey can sometimes feel overwhelming, uncertain and at times, lonely. This space exists to change that.
The Rare Café is an online peer support and wellbeing community for anyone over the age 18 impacted by rare genetic conditions.
Whether you are a parent carer, a partner or spouse, or an adult living with a rare genetic condition yourself – this space is for you.
What you’ll find inside the Café
💬 Community
A welcoming place to share experiences, ask questions and chat with others who truly understand the unique challenges of life with a rare genetic condition.
🤝 Connection
Our AI-supported connection tools can help you find and connect with people who share the same diagnosis or are navigating similar experiences.
🎓 Events & Workshops
A programme of free online events, workshops and talks led by experts and people with lived experience. Explore practical strategies, learn new skills and discover fresh ways to support your wellbeing.
📚 Resources
A growing library of helpful resources, recorded sessions and wellbeing tools that you can explore whenever it suits you, helping you build your own personalised wellbeing toolkit.
The Rare Café, wherever you are
Access The Rare Café from your desktop or laptop, or take the community and support with you on your phone or tablet.
Simply download the free Circle Communities app, log in to The Rare Café and stay connected – at home or on the go.
Free to download. Free to access.
How to join The Rare Café
Step 1
Register – The Rare Café is a private community for people living with rare genetic conditions and their families. We ask everyone to register with The Sandcastle Trust first so we can confirm eligibility and keep the community safe and supportive.
Step 2
Complete the joining form – Once you’re registered, click ‘Join the Community’ below and complete the joining form. If your details match our records, you’ll automatically receive an invitation email with your personal link to join The Rare Café.
Step 3
Follow the link in your invitation email to create your profile – You can then search for others impacted by the same condition or navigating similar experiences, start making connections, and explore everything The Rare Café has to offer.
