Strictly Rare: RAREfest24 Launch

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 award-winning RAREfest24: 'Strictly Rare' An evening to challenge perceptions, dispel myths and imagine the possible.

The Guildhall

RAREfest! A unique festival brought to you by Cambridge Rare Disease Network (CamRARE).This RAREfest24 launch evening opens the biannual science, technology, community and arts festival. An evening of talks, music, comedy and the opening of a new research-inspired art exhibition. An evening to challenge perceptions, dispel myths and imagine the possible.Head to the <a href="https://www.camraredisease.org/rarefest24-friday/" title="https://www.camraredisease.org/rarefest24-friday/" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">RAREfest24 website</a> to meet our Strictly Rare performers. Discover what Saturday 23 Nov's RAREfest hands-on exhibition has in store <a href="https://www.camraredisease.org/rarefest24" title="https://www.camraredisease.org/rarefest24" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">here </a>and book <a href="https://rarefest24.eventbrite.co.uk/" title="https://rarefest24.eventbrite.co.uk/" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">tickets</a>.

Agenda

Doors open

ART-TRAnslations at Strictly Rare - a unique collaboration between artists and researchers showcasing the beauty and rigour of scientific pursuit whilst vividly bringing to life the experience of those affected. Twenty unique pieces of artwork will fill the small hall of the Guildhall. Browse before the show begins, or during the break. The exhibition will remain open through Saturday 23 November too for RAREfest24.  Take a peek https://www.camraredisease.org/rarefest24-art-translations-exhibition/

ART-TRAnslations Exhibition

Always the stars of the show, 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 musical piece representing them.  Unique Feet explore the frustrations of assumptions, the constraints of conformity, the strength of shared experiences,  and the joy of movement.  

Strictly Rare

Imagine a night sky brimming with stars, each a potential host to planets beyond our solar system. They are mysterious, diverse, and endlessly fascinating. They remind us that the universe is vast, filled with countless possibilities and unknown wonders.
For Daval, a passionate scientist living with the rare condition Epidermolysis Bullosa Simplex (EBS), this universe offers intellectual excitement and a unique form of solace. His story is one of resilience, curiosity, and a profound love for learning, especially in the awe-inspiring field of planetary science. This year, at Rarefest24, Daval will share his journey and the wonders of the cosmos with an audience eager to explore the parallels between the mysteries of space and the intricacies of rare diseases.


Science as Solace

DNA variation isn’t a barricade across a biological pathway. It is a tiny ripple, influencing human development. The effects extend into connections between people and the world, shaping something unique. Kate’s research sheds light on the experiences of rare families. Hidden in Donna’s drawing of St.John’s Chapel, are six young adults with a rare condition, reminding us we share the same air.

Shared Air

Interval - Research/Art exhibition, paid bar, refreshments, mingling

"I Am What I Am" is a musical celebration of not just accepting your differences, but learning to thoroughly embrace them. From the UK's biggest stages to Cambridge's Guildhall, transatlantic artist Linseigh Green takes us on her autobiographical musical journey from grappling for humanity & survival as a rare patient to creating organic joy & power. It's about using the crayons left in your box to finish the picture; even if colours are missing. It's about no longer apologising for existing uniquely. And it's about believing, even when it feels perfectly delusional, that there is a way forward.  
Linseigh is a necrotising enterocolitis survivor and functional neurological disorder patient. She's spoken at global conferences, published groundbreaking research and met with US Congress. An actress & classically trained singer, she starred in The Drifter’s Girl. Linseigh is Creative Coordinator at Medea, Assistant Producer at DARKFIELD & holds three degrees from Cambridge, NYU, R Holloway

I Am What I Am

Through stand-up comedy, Phil shares the ridiculous and hilarious sides of living with a neurological condition (Young Onset Parkinson’s Disease). 
"Though he’s witty, upfront and healthily dismissive about living with Young-Onset Parkinson’s, Phil Jerky is first and foremost a crafter of jokes, in the manner of Milton Jones and Gary Delaney. Phil Jokey more like." [Rob Deering]

No Great Shakes

Q&A with Speakers and Performers 

C﻿ome back tomorrow at 10am for the RAREfest24 hands on science, technology and arts exhibition and live talks, panels, monologues and more!! 

Close

Jo, Managing Director of CamRARE officially opens RAREfest24 and introduces our compère for the evening, Hope Winter - singer, songwriter & Rare Disease advocate.  She is a fierce advocate not just in the rare disease space, but also in the music industry; believing passionately in music as a driver for social, personal and cultural change. Namely through her position as the youngest Board Director at The Ivors Academy (2020-2022), co-founding the 'In The Room' programme (2022-2024)

Welcome

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Strictly Rare: RAREfest24 Launch

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