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RAREfest Launch Event 2018

Friday 30 November 2018
Cambridge Guildhall - CB2 3QJ
RAREfest! A first-of-its kind rare disease inspired festival conceived and brought to you by Cambridge Rare Disease Network (CRDN).

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In Cambridge people come out in their droves to be dazzled and captivated by the annual Science Festival, it’s Festival of Ideas, the treasured Literary Festival and new to the circuit, Brainfest. We figured you simply can’t have too many festivals and we needed one of our own.

So, are you curious about the world? Are you fascinated by the wonders of medicine and science? Are you intrigued by how technology can make people’s lives better? Do you like learn about other people’s lives and dispel some of the mystery? Then RAREfest is for you.  

This RAREfest launch evening opens the festival bringing people with rare conditions to the Cambridge Guildhall stage to make you smile, laugh, feel motivated to act and filled with a healthy curiosity about this little known area of science and life. 

Confirmed performers with more in the pipeline…  see the RAREfest website for more details www.camraredisease.org/rarefest

Abbi Brown – Nuns, Prayers and Growing Up Rare

Growing up with a rare disease isn’t always easy, but it does make for some great anecdotes. Cambridge graduate Abbi Brown tells some of her favourites.

Abbi was born with osteogenesis imperfecta, a rare genetic bone condition know as brittle bones. A founding member of the Cambridge Rare Disease Network whilst at University, Abbi has since moved to London, where she works in advertising. In her spare time, Abbi enjoys writing and disability rights advocacy for charities Scope and the brittle Bone Society, and last year made her stand-up debut on the BBC Ouch stage at Edinburgh Fringe.

Michael McGrath – Ice, Slice and Adrenalin

After being diagnosed with the muscle wasting disease Muscular Dystrophy aged 18yrs in 1984, Michael made history 20 years later by becoming the first disabled person to lead expeditions to the North and South Poles. The journey gave rise to a new life plan, inspiring Michael to embark on a career as a sought after inspirational business speaker. He has built an enviable list of clients, providing carefully tailored keynotes and masterclasses for organisations from HMRC, PwC, Roche and the NHS. Earlier this year, he was invited to close the 10th annual TEDx Warwick 2018 event, aptly themed ‘Dare to Defy’ presenting Michael with an opportunity to reaffirm the importance of human connectivity, kindness, compassion and love in his inspiring TEDx presentation called ‘The Power of the Polar Hug’. He possesses a powerful gift to change lives and give hope. The driving force behind The Muscle Help Foundation, a multi-award-winning family charity delivering transformational experiences in the UK for children and young people with muscular dystrophy, this work has become his life’s mission.

John Risdon – The Recorder Unlimited

James Risdon is a recorder player based in London.  He has 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. James performed at the closing of the 2012 Paralympics in London alongside Coldplay, with the British Paraorchestra he has performed at the Symphony Hall, Birmingham and at a TED Talk in Brussels. With Trevor Hughes he has developed a number of recital programmes for recorder with organ and piano including several of their own transcriptions, arrangements and dedications. Trevor will join John on keyboard,

For 12 years James worked at RNIB supporting blind musicians in all aspects of making music.

Please visit www.jamesrisdon.co.uk for concert dates, articles and to buy his debut CD Echoes of Arcadia

UNIQUE FEET -  In collaboration with Wayne McGregor’s dance company

Be prepared to be dazzled. Artists from multi award-winning British dance company ‘Wayne McGregor‘ will work with CRDN’s rare children’s group to create their dance performance.

Unique Feet are a collective of 10 children, each with a different rare condition, some are the only child in the world to be known to have this diagnosis. The group represents the powerful bond that acceptance and friendship bring to 10 unique individuals who have their rarity in common.    Wayne McGregor’s current production ‘Autobiography‘ explores his own genetic makeup and identity after he had his genome sequenced at the campus near Cambridge. As McGregor explains he has turned “his attention to the body as an archive, as he embarks on a cycle of choreographic portraits illuminated by the sequencing of his own genome”.

Adam Pearson and Dagmar Bennett in conversation 

Adam Pearson and Dagmar Bennett in conversation will talk us through their collaboration to create this wonderful sculpture of Adam. Their talk will be part of the #RAREfest18 launch evening alongside other rare speakers, musicians and dancers. https://camraredisease.org/rarefest-friday/
 
Adam Pearson is an Actor (most recently Under The Skin with Scarlett Johansson.), TV producer, Grierson Presenter of the Year Nominee 2016 and winner 2017, public speaker and campaigner against stigma towards people with a visible facial difference.
 
Adam has Neurofibromatosis Type 1, a rare genetic condition that causes excess body tissue to grow predominantly on his face.
 
The artist Dagmar Bennett created a hyper-realistic sculpture of Adam, and through the tactile processes of this sculpture has allowed people to explore Adam's personality and outlook on life.
 
"After hearing his story, and developing a friendship with Adam I felt inspired by his positive attitude, bravery and determination to break down barriers regarding how people with a disfigurement are viewed and treated. In my portrait, I was determined to capture these qualities and show him as an individual."
 
Dagmar will be exhibiting her sculpture of Adam and discussing the process, purpose and impact of this work
 
Dagmar thrives on celebrating differences between people, making art to stimulate thought on the social norms presented to us every day. Her sculpture of Adam Pearson was created to help promote people with a disfigurement or disability being valued as equal. Her traditional sculpting methods in clay are entwined in a strong belief that skill and technique are especially important to an artist being able to portray ideas and concepts fully. Dagmar also believes that art can be a powerful tool to change perceptions; as Gunther von Hagens said – “The breaking of taboos sometimes is the price demanded by creativity.“
 
Meet Adam and Dagmar again on Saturday 1 Dec at the RAREfest exhibition at the Guildhall 11am - 4pm 

 

 

ALASTAIR KENT, OBE FRSA – Compere for the evening

Alastair Kent will open and close the evening. 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.

The evening will begin and end with time for mingling and a drink.

Come and join us for the RAREfest celebratory launch, take a rest then come back for the day on Saturday 1 Dec for the main RAREfest exhibition. Explore a range of science, research, technology and care network stands, listen to short talks, get involved in discussions and watch our silent film festival with 'silent disco' headsets. Tickets for the exhibition are free and available through Eventbrite here 

Event type:
Running time:
18:15 - 21:30 
 
Running times are approximate and subject to change