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Contact CamRARE

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Unique Feet

Frequently Asked Questions

If you’re interested to learn more about CamRARE’s Unique Feet group and how it works, browse through our frequently asked questions below.

What is Unique Feet?

Unique Feet is a supportive community for children, young people, their siblings and caregivers, affected by any rare diseases, or who are undiagnosed, in the East of England.

Unique Feet provides local families with a safe, non-judgmental and supportive environment to meet and enjoy activities together. It’s the reason why the group has continued to thrive and expand. From its modest beginnings, the group is flourishing with over 30 active families and 120 beneficiaries.

Aside from regular accessible and inclusive indoor and outdoor family activities, Unique Feet also offers parents a chance to support each other and receive and offer advice and through an active WhatsApp group, a private Facebook page, monthly community newsletter and regular parents lunch meet-ups.

What are the benefits of joining Unique Feet?

Unique Feet offers many benefits to it’s family members. These are just some of the benefits our families say that Unique Feet offers them:

  • Feeling part of a community. A sense of belonging.
  • Opportunities to take part in inclusive and supportive activities which might otherwise be out of reach
  • Friendships for all – children, siblings and parents.
  • Sharing activities with siblings.
  • Feeling safe with friends without judgment.
  • Reduced isolation and improved mental health and physical well-being.
  • Building confidence, resilience and feeling empowered to challenge
  • A supportive network of parents with lived experience who readily share tips and advice on how to navigate health care, education, related paperwork, equipment, the local area and more.

Mum Stacey said “It’s been wonderful to see ‘L’ have new experiences that she might not have otherwise had, to make friends, but also to see her become more confident. ‘L’ is often nervous in new situations and I remember the first time we came to Challis Garden she needed to hold our hand and explored carefully. Now she feels completely at home there, has made friends and will wander off to find the tractors. There are not many places where she will do that or feel safe enough to do that.”

When and where do activities take place?

Our activities take place across Cambridgshire.

We enjoy regular meetings at the lovely Challis Gardens in Sawston, arrange frequent swimming sessions at Impington Sports Centre, and tennis at the Cambridge Lawn Tennis Club. We have also arranged trips to the Snozone in Milton Keynes and water sports at Grafham Water. We’re adding new activities and venues all the time so tell us what you’d like to do!

Do you need anything from me/my family when joining?

We ask all our new members to complete a registration form and photo permission form.

We love all our families to advocate for rare diseases and Unique Feet and provide a collective voice for our region. We provide lots of help for you to get involved, but no pressure.

Occasionally, we may ask for support with running events, but this is your choice.

We’d love you to help fundraise for us when you feel settled in the group. But again, no pressure.

How much does it cost?

There are no fees to join or take part in activities. Occasionally we may do an activity that isn’t funded, such as Wimpole Hall Christmas Lights, where we ask for a donation. We are funded through small grants and community fundraising.

How do I join the Unique Feet Community?

Get in touch with us at info@camraredisease.org and we’ll arrange an introductory call with you. On the call we can tell you more about Unique Feet, hear from you about your family and answer any questions you may have about CamRARE or Unique Feet.

What types of activity do you organise?

We organise a range of activities suitable for the whole family! Examples of previous activities include swimming, tennis, horseriding, dance/movement sessions, clip n climb, skiing/sledging, water sports, You Can Bike Too and garden visits. We’ve also organised day trips to the Raptor Foundation, Wimpole Hall, Cambridge Botanic Gardens and more. For the parents/carers in our group we organise online catch-ups and in-person coffee and lunch trips. You can get a flavour here www.camraredisease.org/unique-feet-events

Are all the activities accessible?

The majority of our activities are fully accessible and adaptable for all members of the group. We carefully select providers to partner with who understand the needs of our group, who are able to meet these through adaptations to the activity, equipment etc and who are willing to personlise their provision. We visit new providers before agreeing on a partnership so we can make sure they fit with our ethos.

Can siblings take part in activities?

Yes! We welcome all siblings to our activities as we know it’s important for them to feel included and to meet new people and make friends with others who understand them. Unique Feet is a group for the whole family and that is what makes us different.

What age range are the children in Unique Feet?

We have children who range from age 2 all the way up to age 20. If you’re unsure if your child or young person is the right age, just ask us.

What else does the Unique Feet community offer?

Aside from the support we mentioned above, there are also opportunities to share your rare story through our network on our social media channels, newsletter, website and sometimes in the media.

We also offer the children the opportunity to apply for a lovely bespoke and unique rare bear through a joint programme with Rare Science.

Finally, we are involved in a hospital patient passport project called ‘This is Me Patient Passport’. If you‘d like to get involved in trialing a passport we can discuss this in our introductory call.

Are there other ways to support CamRARE?

  • Fundraise for us through Just Giving
  • Advocate for CamRARE and rare disease
  • Shop online with Easyfundraising and select CamRARE as your charity
  • Donate to CamRARE via PayPal
  • Volunteer your skills 
  • Support an event
  • Find out more through our fundraising page here

Is it safe?

CamRARE has the relevant policies and protocols in place to keep you and your information safe. All our members of staff involved with Unique Feet have a valid DBS check. We have an up-to-date safeguarding policy and child protection procedures in place.

We have a privacy policy to keep your data safe. We have a photo permissions form which families complete upon joining Unique Feet so we can ensure that we adhere to your permissions.

Our Unique Feet WhatsApp and Facebook groups are private, and accessible only to Unique Feet member families. New members can only be added by a member of staff.

We seek risk assessments and public liability certificates from all our activities as well as carrying our own risk assessments.