RAREfest22 Launch ‘Strictly Rare’
Friday 25th Nov
19:00 – 21:00
RAREfest launch evening opens the biannual science, technology, community and arts festival. An evening of performance, talks, music and comedy and the UK launch of the Days of Rare photography exhibition. An evening to challenge perceptions, dispel myths and imagine the possible.
An Exploration of the Possible
How do you write without hands? Get dressed? Will you be allowed to drive a car? The true meaning of never giving up. How do you join in with sport? As the world is set up for the majority how can we flex the rules – some physical, most man-made, to include everyone? An exploration of the possible….
Laughter is the best medicine
Phil is an amateur stand-up comedian from Birmingham. Diagnosed with Young Onset Parkinson’s Disease at the age of 36, Phil shares the lighter and more ridiculous parts of his condition through his comedy. He is better at telling jokes than he is at playing Jenga.
Rare entrepreneur and photographer
When I was younger, I found it hard to fit in and make friends. Through my photography and dancing I created ways to feel positive about myself and challenge how some people might see me. Now I am older, through my passions I have created a platform to raise awareness around disabilities.
Eddison & Raife Miller
Rare Quiz and Myth Busters
CamRARE’s children and young people’s community, Unique Feet, takes to the stage with ‘Strictly RARE’. They are a diverse group with shared experiences of living with rare conditions. Together with some siblings and supporters, they perform a piece representing them. Through three songs, Unique Feet explore the frustrations of assumptions, the constraints of conformity, the strength of shared experiences, and the joy of movement.
‘Pompe & Circumstance’
Pompe Community Choir
Our evening closes with music from the Pompe community choir – a screening of an uplifting rehash of Elgar’s famous song ‘Pompe and Circumstance’ by a community of people living with the rare condition Pompe Disease, which affects around 200 people in the UK, recorded at Abbey Road studios. Our Unique Feet community will take to the stage to join in the sing-a-long.
You can join too!
Friday evening’s schedule…
Paid refreshments available
Welcome – CamRARE
Rare Youth Revolution: Brothers Eddison and Raife Miller host a rare quiz and myth busters session
Strictly Rare: Unique Feet performance. CamRARE’s children’s and young people’s rare community
Rare entrepreneurs. Channelling joy and talent into business with Glaswegian photographer and owner of an ultra rare condition, Dylan Lombard
They say laughter is the best medicine. Comedy with Phil ‘Jerky’ Smith
An exploration of the possible with John Willis founder of Power2Inspire
Music with the Pompe community choir: Pompe and Circumstance