An online peer support and wellbeing community for people living with rare genetic conditions and their families.

JOIN THE COMMUNITY

What is The Rare Cafe?

The Rare Café is a safe, secure and supportive online community where people living with rare genetic conditions and their families can connect with others who truly understand.

Whether you’re looking for someone who shares the same diagnosis, is at a similar stage of the journey, or simply understands the challenges you’re facing, The Rare Café makes it easy to find and connect with people who “get it”.

Alongside peer support, you’ll find free events, wellbeing activities and practical resources, all designed to reduce isolation, strengthen emotional wellbeing and resilience, and support you and your family through the unique challenges of living with a rare genetic condition.

 

 

Coming up in the Café ……

 

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. You can register HERE.

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.

Contact Us:

Phone 0207 1998 261
Email info@sandcastletrust.org