RAREfest24 Launch Evening
Friday 22nd Nov
18:30 – 20:30
Cambridge Guildhall
RAREfest’s ‘Strictly Rare’ launch evening opens the biannual science, technology, community and arts festival. An evening of performance, talks, music, comedy and research-inspired art. An evening to challenge perceptions, dispel myths and imagine the possible.
Hope Winter
This Evening’s Host
Our compere for the evening, Hope Winter is an acclaimed singer (The Voice 2023), songwriter and Rare Disease advocate, not just in the rare disease space, but also in the music industry; believing passionately in music as a driver for social, personal and cultural change. Namely through her position as the youngest Board Director at The Ivors Academy (2020-2022), co-founding the ‘In The Room’ programme.
CamRARE’s ‘Unique Feet’
Strictly Rare
CamRARE’s community, Unique Feet, takes to the stage with ‘Strictly RARE’. A diverse group with shared experiences of living with rare conditions. Together with some siblings and supporters, they perform 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 and movement.
Donna McLuskie & Kate Baker
Shared Air
DNA variation isn’t a barricade across a biological pathway. It is a tiny ripple, influencing human development. The effects extend into connections between people and the world, shaping something unique. Kate’s research sheds light on the experiences of rare families. Hidden in Donna’s drawing of St.John’s Chapel, are six young adults with a rare condition, reminding us we share the same air.
Linseigh Green
I am What I Am
Linseigh Green is an actor, classically trained singer, writer, rare disease activist, & immersive audio producer based in London. She has recently starred in the 2024 Drifters Girl UK Tour and will bring her musical celebration of not just accepting your differences, but learning to thoroughly embrace them
Phil Jerky
No Great Shakes
Phil, an amateur stand-up comedian from Birmingham was diagnosed with Young Onset Parkinson’s Disease at the age of 36. A big hit at RAREfest22, Phil returns to share the lighter and more ridiculous parts of his condition through his comedy. He is better at telling jokes than he is at playing Jenga.
Daval Amratlal
Science as Solace
For Daval, a passionate scientist living with the rare condition Epidermolysis Bullosa Simplex (EBS), the universe offers intellectual excitement and a unique form of solace. His story is one of resilience, curiosity, and a profound love for learning, especially in the awe-inspiring field of planetary science.
