Friday 30th November
18:30 UNTIL 21:30

The #RAREfest18 launch event promises to be an evening featuring powerful rare stories and talent expressed through both musical and dance performances...
ADAM PEARSON & DAGMAR BENNETT
Breaking Taboos
Adam Pearson is an Actor (most recently Under The Skin with Scarlett Johansson), TV producer, Grierson Presenter of the Year Nominee 2016, public speaker and campaigner against stigma towards people with a visible facial difference.
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Abbi Brown
Growing up with a Galapagos Tortoise: and other funny stories
Growing up with a rare disease isn’t always easy, but it does make for some great anecdotes. CamRARE founding member and Cambridge graduate Abbi Brown tells some of her favourites.
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Michael McGRATH
Ice, Slice & Adrenalin
After being diagnosed with the muscle wasting disease Muscular Dystrophy (MD) aged 18 in 1984, Michael made history 20 years later by becoming the first disabled person to lead expeditions to the North and South Poles.
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JAMES RISDON
The Recorder Unlimited
James Risdon is a recorder player based in London. He has a rare eye condition, Leber’s Congenital Amaurosis, and learns all his repertoire from Braille. He is a member of the newly-formed Brewery Band who performed at the Edinburgh Fringe in August 2017.
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UNIQUE Feet
In collaboration with Wayne McGregor’s dance company
Be prepared to be dazzled. An affiliate artist from multi award-winning British dance organisation Studio Wayne McGregor will work with CamRARE’s rare children’s group to create their dance performance.
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ALASTAIR KENT, OBE FRSA
RAREfest18 welcome address
Alastair was the executive director of Genetic Alliance UK (the UK alliance of over 200 patient support groups for patients and families with rare and genetic disorders) for almost 25 years.
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Image credit:‘Cystine’ by Stefan Eberhard
Friday evening’s schedule…
Doors open
18:15
Drinks and socialising
18:15 – 18:50
The Guildhall small hall
Welcome Address from Alastair Kent, OBE
18:50
Speaker – Abbi Brown
Growing up with a Galapagos Tortoise: Rare Disease and Other Funny Stories
19:00
Performance – CamRARE’s Unique Feet rare dancers
A collaboration with award-winning Wayne McGregor’s Dance Company
19.20
Speakers – Adam Pearson and Dagmar Bennett
Breaking Taboos
19:30
Interval
19:50
Performance – James Risdon
The Recorder Unlimited
20.05
Speaker – Michael McGrath
Ice, Slice and Adrenalin
20:25
Closing remarks
20:50
Drinks and socialising
21:00 – 21:30
The Guildhall small hall