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RAREfest22 Launch ‘Strictly Rare’

Friday 25th Nov

19:00 – 21:00

Cambridge Guildhall

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.

Cambridge Rare Disease Network - RAREfest22 | Friday 1
John Willis Power2Inspire

john Willis

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….

Phil Badger

Phil Jerky

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. 

Dylan Lombard

Dylan Lombard

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

Eddison & Raife Miller

Rare Quiz and Myth Busters

Brothers, Eddison (11) and Raife (10), are excited to be returning to Rare Fest this year to introduce the RARE Youth Revolution Myth Busters session where our youth community set out to dispel the myths and misconceptions of living with a rare disease. The duo will also bring their own brand of cheek and charm with another RARE Youth Quiz—testing your knowledge on all things genetics and rare disease. Education and giggles guaranteed!
Unique Feet performance image Friday strictly rare

Unique Feet

Strictly Rare

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 & 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…

Doors open

18:30

Paid refreshments available

18:30

 

Welcome – CamRARE

19:00

Rare Youth Revolution: Brothers Eddison and Raife Miller host a rare quiz and myth busters session

19:05

Strictly Rare: Unique Feet performance. CamRARE’s children’s and young people’s rare community 

19.35

Rare entrepreneurs. Channelling joy and talent into business with Glaswegian photographer and owner of an ultra rare condition, Dylan Lombard

19:50

They say laughter is the best medicine. Comedy with Phil ‘Jerky’ Smith

20:10

An exploration of the possible with John Willis founder of Power2Inspire

20:20

Music with the Pompe community choir: Pompe and Circumstance

20:40

Closing remarks

20:55

Close

21:00