Children and their families living with rare conditions can often feel isolated and may rarely meet someone else with the same disease. CRDN wanted to provide a safe and welcoming space for children with a range of rare conditions to be able to meet locally for fun, friendship and confidence building activities.
In 2015 we formed a small dance group for children living with a range of rare conditions from the Cambridge area. Choreographers from professional contemporary dance group, Collective Arts Movement, helped the children to express themselves in whatever way they felt comfortable and able. Their inaugural performance was at the Sobi charity ball in April 2016, and it was a great opportunity for these little superstars to shine! All proceeds from the ball supported CRDN, the Haemophilia Society and Rare Disease UK, and the hosts, Sobi, are a pharmaceutical company focusing on rare diseases, so the whole night was a brilliant celebration of the rare disease community.
We often think of rare diseases in medical terms and it’s easy to lose sight of the children and families at the heart of our work. The kids rehearsed together weekly for several months, and over that time a lovely sense of community has emerged as the children and their families built friendships and supported each other. We received this beautiful letter of thanks from the parents of the Unique Feet children.
In autumn 2017 we were delighted to be funded by a People’s Health Trust grant using money raised by HealthCommit through the Health Lottery to help grow and develop our Unique Feet children’s activity group. People’s Health Trust is an independent charity funded by 51 local society lotteries and the money they raise through The Health Lottery and we are honoured to have received their support. We’ve welcomed new members of all ages over the last few months and have been getting involved in all sorts of fun.
We do a range of activities which are fully accessible to all involved.
* Dance – projects to create performances for a charity ball and RAREfest18
* You Can Bike Too – accessible cycling at Milton Country Park
* Yoga – suitable for all abilities
* Horse–riding – suitable for all abilities
* Get together’s and day trips – for birthdays, Christmas and during school holidays
It’s wonderful to see friendships and community developing amongst our local families affected by rare conditions. The group is a wide mix of children of different ages.
Live in Cambridgeshire and what to get involved? Contact Jo for more info.