RAREfest22 Launch Evening: Strictly Rare

CamRARE is a charity based in Cambridge, UK. We're fighting for 350 million forgotten patients worldwide living with a rare disease.  We hold educational and networking events to bring together all stakeholders to stimulate dialogue and collaboration. We support children and families locally who are impacted by rare disease.

Cambridge Rare Disease Network (CamRARE)

The evening launch of RAREfest22:  'Strictly Rare'  An evening to challenge perceptions, dispel myths and imagine the possible.

The Guildhall

<p>RAREfest! A first-of-its kind festival conceived and brought to you by Cambridge Rare Disease Network (CamRARE).</p><p>This RAREfest launch evening event 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. </p><p>In Cambridge people come out in their droves to be dazzled and captivated by science, technology, arts and literary festivals.  We figured you simply can’t have too many festivals and we needed one of our own.</p><p>Are you curious about the world? Fascinated by the wonders of medicine and science? Are you intrigued by how technology can make people’s lives better? Do you enjoy learning about other people’s lives and dispelling some of the mystery? Then RAREfest is for you.  </p><p></p>

<h2>See the RAREfest website for more details <a href="https://www.camraredisease.org/rarefest22-friday" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">here </a></h2><h1>P﻿ROGRAMME</h1><h3>18﻿:30   Doors open for mingling and refreshments (paid bar)</h3><h3>19﻿:00   Welcome</h3><h3>19﻿:05   <a href="https://www.rareyouthrevolution.com/" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">Rare Revolution Youth</a> - Brothers Eddison and Raife Miller host a rare quiz and myth busters session. Fingers on buzzers! </h3><h3>19﻿:35   <a href="https://www.camraredisease.org/uniquefeet" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">Unique Feet</a> performance. CamRARE's children and young people's community take to the stage with 'Strictly RARE' . </h3><h3>1﻿9:50   Rare entrepreneurs. Channelling joy and talent into business.  <a href="https://dylanlombardphotography.co.uk/" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">Dylan Lombard</a> "I may look a bit different but I have something to show  the world." Glaswegian teenager Dylan uses photography to connect</h3><h3>2﻿0:10   Comedy with <a href="https://podcasts.apple.com/ca/podcast/they-say-laughter-is-the-best-medicine/id1404983468?i=1000458611586" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">Phil 'Badger' Smith</a>Living with early onset Parkinson's is no joke.  But for Phil from Birmingham, 'Laughter is the Best Medicine'.</h3><h3>2﻿0:20   An exploration of the possible with <a href="https://www.youtube.com/watch?v=sP8zTmB96jA&t=3s" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">John Willis</a>, founder of <a href="https://www.power2inspire.org.uk/" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">Power2Inspire</a>John was born without fully formed arms &amp; legs. He believes that difference is a blessing not a curse.  </h3><h3>2﻿0:50   'Pompe and Circumstance'  - Music with the Pompe community choir - a screening of an uplifting rehash of Elgar's famous song by a community of people living with the rare condition Pompe Disease. </h3><h3>2﻿0:55   Wrapping up</h3><h3>2﻿1:00 Close</h3><ul><h3></h3></ul><h3>C﻿ome back tomorrow at 10am for the RAREfest22 hands on science, technology and arts exhibition and live talks, panels, monologues and more!! Get your FREE ticket <a href="https://www.eventbrite.co.uk/e/344157302757">here </a></h3>

<h2>JOHN WILLIS</h2><h3>An Exploration of the Possible</h3><p>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? John was born without fully formed arms and legs, and he believes that difference can be a blessing, not a curse. Join him for an exploration of the possible….</p><p></p><h2>PHIL JERKY</h2><h3>Laughter is the best medicine</h3><p>Phil is an amateur stand-up comedian from Birmingham. Diagnosed with rare  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. </p><p></p><h2>DYLAN LOMBARD</h2><h3>Rare entrepreneur and photographer</h3><p>Glaswegian teenager Dylan is one of 13 people worldwide living with a rare condition called MDP - mandibular hypoplasia, with deafness and progeria features. He told us "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." Dylan will share a window into his world with us through his stunning images. </p><p></p><h2>EDDISON &amp; RAIFE MILLER</h2><h3>Rare Quiz and Myth Busters</h3><p>Brothers, Eddison (11) and Raife (10), are excited to return to RAREfest 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 of all things genetics and rare disease. Education and giggles guaranteed!</p><p></p><h2>UNIQUE FEET</h2><h3>Strictly Rare</h3><p>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. </p><p></p><h2>‘POMPE &amp; CIRCUMSTANCE’</h2><h3>Pompe Community Choir</h3><p>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.</p><p></p>

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RAREfest22 Launch Evening: Strictly Rare

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RAREfest22 Launch Evening: Strictly Rare

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