Page 3 - CamRARE | Unique Feet - Impact Report 2022

Foreword

Early on we recognised that there was a gap in the rare disease network in the United
Kingdom. Missing from the national rare disease landscape was a local, regional
community group for families living with all types of rare conditions. More specifically, at
the Cambridge Rare Disease Network (CamRARE) we wanted to build a regional rare
community group where affected families could meet regularly to engage in group
activities, share experiences and form a collective voice to raise awareness on rare
conditions and improve local services.

In 2016, Unique Feet was launched with a small group of four children living with a rare
condition who met for dance rehearsals in preparation for their debut at a prestigious
Cambridge charity ball. These sessions provided a vital space for families to connect and
overcome the feelings of isolation that can accompany raising a child with a rare
condition. Unique Feet’s performance was a triumph! Tickets sold out, and we were

bursting with pride as they took their standing ovation. The seeds for Unique Feet’s
future success had been sown.

Unique Feet provided local families with a safe, non-judgmental and supportive
environment to meet and is 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 100 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 and a private Facebook
page. In addition families are offered diverse opportunities to help raise awareness and be
the voice of those with lived experience in this region, and more broadly.

For families with rarity in common, Unique Feet represents the powerful bond that shared

experience, understanding, acceptance and friendship bring. In the following report, we
share how far Unique Feet has come and the positive impact it has had on rare children,
their families and the wider Cambridgeshire community. We also set out our vision for
future of the Unique Feet and how we plan to continue empowering families.

We believe that Unique Feet could become a model for other regions across the United
Kingdom. We invite you to read on to find out why...!

Jo Balfour
Unique Feet Founder and

“Having people who ‘get it’ when I CamRARE MD

speak about things and being able to

belong somewhere.”