RAREfest24 Launch Evening: Strictly Rare

Fri 22 November 2024

The Guildhall

RAREfest24 launch evening opens the biannual science, technology, community and arts festival. An evening of performance, talks, music and comedy. An evening to challenge perceptions, dispel myths and imagine the possible.

Our compere for the evening is Hope Winter. 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.

Amit Ghose - Amit’s journey living with neurofibromatosis type 1 (NF1) has taught him to find confidence in his unique appearance and navigate a world sometimes too focused on appearances. Encounters with curious onlookers have strengthened his resilience and conviction that we are all uniquely human. His message is clear: embrace your individuality and remember that our differences are what make us human.

Linseigh Green - 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 - 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 - 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.

Cost: Pay what you think