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Friday 30th November

18:30 UNTIL 21:30

Cambridge Rare Disease Network - RAREfest | Friday 1

The #RAREfest18 launch event promises to be an evening featuring powerful rare stories and talent expressed through both musical and dance performances...

Cambridge Rare Disease Network - RAREfest | Friday 2

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.

Read more…

Cambridge Rare Disease Network - RAREfest | Friday 3

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. CRDN founding member and Cambridge graduate Abbi Brown tells some of her favourites.

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Cambridge Rare Disease Network - RAREfest | Friday 4

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.

Read more…

Cambridge Rare Disease Network - RAREfest | Friday 5

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.

Read more…

Cambridge Rare Disease Network - RAREfest | Friday 6

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 CRDN’s rare children’s group to create their dance performance.

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Cambridge Rare Disease Network - RAREfest | Friday 7

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 – CRDN’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

Close

21:30

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