Contact CamRARE

Contact CamRARE

A Kaleidoscope of Butterflies (Courage, Joy, Hope)

Cambridge Rare Disease Network - RAREfest24 | A Kaleidoscope of Butterflies 1

A Kaleidoscope of Butterflies (Courage, Joy, Hope)

Butterflies are significant for so many reasons. Fluttering around in their array of vibrant colours, they are often symbolic of transformation, fragility, new life, past lives, and hope. Collectively, they are called a kaleidoscope, but butterflies also hold reference to E.B (Epidermolysis Bullosa) which has the nickname: Butterfly Skin.

Our 3 circular pieces, viewed through different lenses, offer a multifaceted experience. The first, a poignant portrayal of sadness and isolation, highlighting the harsh reality of living with the disease.

The second, a celebration of childlike joy and play, a reminder of the vibrant spirit within all children. Not defined by the disease, their courage and resilience is extraordinary.

And finally, the last lens illustrates a hopeful glimpse into a future, backed by a dedicated scientific community, working towards increasingly effective treatments.

Interpret these panels in your own way and experiment with the different lenses… while some elements may disappear, the children will always stand out. Ultimately, the artwork is designed for them.

Cambridge Rare Disease Network - RAREfest24 | A Kaleidoscope of Butterflies 2
Cambridge Rare Disease Network - RAREfest24 | A Kaleidoscope of Butterflies 3
Cambridge Rare Disease Network - RAREfest24 | A Kaleidoscope of Butterflies 4
Cambridge Rare Disease Network - RAREfest24 | A Kaleidoscope of Butterflies 5
Cambridge Rare Disease Network - RAREfest24 | A Kaleidoscope of Butterflies 6

Susy Snow and Gracie Tapner

Established in 2016 by illustrator best friends Susy Snow and Gracie Tapner, Snowtap is the creative studio behind the whimsical, bright and playful illustrations that are known for being licensed on greeting cards, stationery, home and giftware.

Dr Matthew Caley

Senior Lecturer in Cell Biology

Dr Emanuel Rognoni

Senior Lecturer in Endocrinology, Queen Mary University of London

We work on a rare genetic skin disease disease called epidermolysis bullosa (EB), which causes severe skin fragility leading to extremely painful skin blisters. This fragile skin is likened to a butterfly’s wing with any contact causing damage and blistering.

Sadly most patients with the most severe form, junctional epidermolysis bullosa (JEB), die within the first year of life. We are working to gain a deeper understanding of this disease and to find new treatments.

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