Connecting Rare Families in the Eastern Region
At CamRARE (Cambridge Rare Disease Network) we recognise that for many young people living with rare disease (RD), finding a sense of belonging can be tough. If you might never meet someone else who faces the same challenges that you do, it can be isolating, lonely, even painful – and for parents, siblings and carers too.
So, back in 2016, CamRARE established our own little RD tribe. Initially based around shared dance activities, we named our group Unique Feet.
After seeing the impact of the connections made between those original families, our group soon began to expand, to become a community welcoming all children (and their parents, siblings and carers), with any rare or undiagnosed condition.
Unique Feet now offers regular, cool activities as diverse as archery, canoeing, climbing, skiing, or simply meeting for a cuppa or a picnic. We know that everyone enjoys different things, and that our group has very varied access needs, so we offer a variety of activities throughout the year so that there is something for everyone. The activities are carefully curated to be as inclusive and accessible as possible, to enable everyone to give things a go!
Unique Feet brings together children and families who understand each other’s shared challenges and difficulties but who also know how important it is to celebrate their achievements. That understanding enables the Unique Feet tribe to raise one another up, to help achieve hopes and dreams that might be so much more difficult to achieve alone.
We’d love to help more children and more families by welcoming more members from across the eastern region, and organising even more activities in the future. Will you come and join us?
Love having the support network of other families in similar situations to ourselves. I find WhatsApp groups very helpful to be able to talk to / share ideas with other families.
At the event we attended, I immediately felt we were included and I felt a lot more relaxed than I often do at events designed more for neurotypical children.
Unique Feet offers us extreme support and networking opportunities that make a huge impact on our ability to deal with my child’s rare condition. Thank you for all your amazing work.
Join our Unique Feet Community
Are you a family with a child affected by a rare or undiagnosed condition living in the Cambridgeshire or Eastern region? Contact us to find out more about joining our thriving community
Strictly Rare at RAREfest24
Our group takes to the stage with ‘Strictly RARE’ performing a piece representing them; a musical performance exploring the frustrations of assumptions, the constraints of conformity, the strength of shared experiences, and the joy of music.
My Story, My Way 2023
Watch our My Story, My Way film. Embracing all ‘voices’: inclusive advocacy for young people with different communication styles with rare conditions. Using simple analogue photography and film as a window into young people’s worlds.
Frequently Visited Places
Mary Challis Gardens, Sawston
We are regular visitors to the beautiful Challis Gardens in Sawston. Challis Gardens have generously granted us private access to the gardens so families gather together to chat and play in these beautiful surroundings. The little ones can enjoy exploring, playing on the tractors and even pond dipping!
Windmill hydrotherapy pool, Fulbourn
Our families access the Windmill hydrotherapy pool in Fulbourn, for regular exclusive sessions. This pool is ideal for our group as there is a hoist from the changing room straight to the pool, plus the temperature is lovely and warm!
Cambridge Lawn Tennis Club
Our families enjoy regular coach-led tennis sessions at the Cambridge Lawn Tennis Club during the school holidays. All ages and abilities are welcome and the coaches are so welcoming and friendly. Our group love coming here to be active and meet with friends.