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RAREfest20 Highlights

RAREfest20 will bring you the brightest minds, life-changing innovators and powerful patient voices to share the best ideas with engaged and diverse audiences from around the world. There are speakers and exhibitors of all ages and activities for all to enjoy. Come and join us on 28 Nov and join in the fun.

The stories behind the faces

The headline banner gracing our specially designed RAREfest20 landing page (you’ll get to see this soon when we launch the official event page) isn’t just a splash of colour and some pretty faces. This banner is a story in itself demonstrating the uniqueness and diversity of the rare disease community. These images were taken and loaned to us by the brilliant Same But Different charity who are raising awareness of rare disease, one captivating photo at a time. Click each image below to read the story behind the star. 

‘Thank you to Same But Different for sharing these wonderful images and to the individuals for sharing their stories. Find out more out their work and the individuals involved at www.samebutdifferentcic.org.uk/rareawaregallery

April

FFion & Poppy

Oliva

Izzy

Hannah

TAYE

Iwan

Grace

Amara

Noah & Freddie

Tyrese

James

Tomos

Katja

Zakiyyah

Jake

Amerah

Sabah

It’s almost showtime! Let’s meet some of the speakers

Dr Giles Yeo

 Dr. Giles Yeo, recently awarded an MBE,  for his work in research, communication and engagement, works at the University of Cambridge studying the genetics of obesity and the mechanisms of how our brain controls food intake. While interested in the general population, Giles says information garnered from studying rare disease patients with severe obesity helps understand the biology which has a broader impact on society and everyone else.  Giles packed the room at his talk at RAREfest18. A listener said “Giles Yeo was great – very amusing (Transpoosion and crapsules!)”.  As well as working at the University he is author of Gene Eating and presenter on the BBC’s “Trust Me I’m a Doctor“. We recently interviewed Giles about his talk for RAREfest20, learned about his hero and his favourite place. Find out more here.

 

Meet the DNA Doc – Dr Melita Irving

 

At RAREfest20 Melita will be doing a live DNA extraction, not on a human (phew!) but on a strawberry. She’ll be interviewed by Dr Lucy Mackay from Medics4RareDiseases, a charity that drives an attitude change towards rare diseases amongst medical students and doctors
in training.

We caught up with Melita ahead of  RAREfest20 to talk all things DNA…

Read our interview with Melita here

Dana Perella – Every Cookie is Hope

Ten-year-old Dana from Boulder, Colorado, is no ordinary kid. In fact, she’s done something extraordinary in the quest to find treatments for rare diseases. What started out as a fundraiser to help her friend Mila has now turned into a lucrative non-profit cookie enterprise where every batch equals much needed cash for cures. At RAREfest20, Dana will lead a cookie decorating workshop and answer your questions. She hopes you’ll be inspired to get baking, too! We chatted with Dana ahead of RAREfest – read our interview here.

Tom Alertoth-Williams

Meet Tom and his daughter Julia in this video clip – in Tom’s own words “groom to unicorn-riding wonder girl”. Tom will be taking part in a webinar at RAREfest20 alongside charity Same but Different and some of the scientific team from genome sequencing experts, Illumina.

Together with other parents, these three came together to create the award-winning and moving short film “A Journey of Hope“.  Find out more about the film below and take a glimpse at what’s to come.

A Journey of Hope – Enabling the New Possible

‘Journey of Hope’, created by Same but Different, offers a glimpse into the lives of families where children have received a rare genetic diagnosis. In a world where labels and diagnosis are often framed negatively, this film highlights the reality of both the search for a diagnosis and the impact of the diagnostic moment. Above all else it compels us to think about the power of genetic diagnosis to reframe how we view our relationships, how we understand each other and most significantly, how a different kind of ‘hope’ is possible. The full version of the film will be shown at RAREfest20 with a wrap around discussion with the scientists and families involved. We spoke to  Ceridwen Hughes, the film’s creator ahead of RAREfest here 

Sarah Lippett – A Puff of Smoke

If you are a young person on your diagnostic journey or you’ve travelled that path yourself or with a loved one, then you’ll want to check in with RAREfest20 exhibitor, Sarah Lippett. Why? Because Sarah, who has two rare diseases, knows better than anyone the impact of ‘not knowing’ and the frustration of misdiagnosis. Sarah’s comic book memoir  ‘Puff of Smoke’ is all about the isolation of being undiagnosed. Her journey lasted from the age of seven to eighteen, a young lifetime of lengthy spells in hospital, lost friendships and missed opportunities. As an author and illustrator, Sarah wanted to create something that would give hope to young people on their diagnosis journeys – and raise awareness within medical circles. Read our interview with Sarah here

Cecily Morrison – Inclusive Design

Cecily Morrison is a principal researcher at Microsoft Research in Cambridge. She leads a multi-disciplinary team that innovates new technologies to enable people.

Last month Cecily was awarded an MBE for services to inclusive design. She and her team are exhibiting at RAREfest20.

Read our interview with Cecily here

Cambridge Rare Disease Network - RAREfest20 | Highlights 1

Get your ingredients ready for the DNA Doc

A live DNA extraction with the DNA Doctor – not on a human, but a strawberry! 

120 ml water, 1 cocktail stick, 3-4 ripe strawberries, 1 ziplock bag, 1/2 teaspoon of salt, 2 teaspoons of washing up liquid, 1 coffee filter, rubbing alcohol, 2 glass containers. 

Bake your cookies – recipe now available

Cookies4Cures will be demonstrating a live cookie decorating activity at RAREfest20 on Saturday 28th November at 15:00.

You’ll need to bake your cookies ahead of time, allow them to cool and prepare your icing ingredients so that you have everything ready for the live demo.

Download the recipes here.

Cambridge Rare Disease Network - RAREfest20 | Highlights 2
Sarah Lippet's drawing activity sheet

Introduce yourself with Sarah Lippet’s drawing activity

Artist and author Sarah Lippett AKA Crayonlegs will be exhibiting at RAREfest20 this SAturday 28th November. She has prepared a fabulous drawing activity for the kids. 

Download the worksheet here or head over to Sarah’s booth and get a copy. Grab your colouring pens and pencils and get arty! Share your pictures with Sarah and CRDN – we’d love to see them!