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RAREfest22 Talks Programme

Saturday 26th November 10:30 - 15:30

Live talks, panel discussions, monologues, film and music in the Chamber Room (across the corridor from the exhibition hall).

Take a  break between exploring the exhibits and hear from some of the brightest minds in science, medicine and research, creators of life-changing technology and powerful patient voices which need to be heard.

Check out the speaker profiles

RAREfest22 Saturday Talks Programme

Head to the Chamber Room
TimeWhat's onSpeakersDescription
10:30 - 11:30Genomics! The Musical! Rare Disease SpecialRishi Nag, Singing ScienceA one person show where the fundamentals of genes and our DNA are explained using a series of ‘musical mini-lectures’ with catchy songs and a video backdrop. A light touch of humour and fun the whole family!
11:30 - 12:00Finding a Needle in a HaystackAmanda Pichini, Genomics England; Kate Downes, East Genomics; Peter Fish, Mendelian - hosted by medical students Angela Lochmueller, and Lydia SeedExperts in genomics, newborn screening and AI respond to soundbites from people living with rare conditions who have experienced a diagnostic odyssey. How can we find the needle in the haystack when doctors may be faced with a condition they've never seen before?
12:15 - 12:45DNA is the Blueprint. But for What?Dr Evan Reid, CIMRRare genetic diseases are caused by alterations in the DNA code - but how? Let's look at how quirky DNA code translates to quirky proteins
13:00 - 14:00Rare FilmsTristan and Cam RARE; Koyowa Kirin; Alexion Astra Zeneca Rare Disease; Felicity Boardman, University of Warwick; David Ross13:00 Tristan's Rare Disease day Every Day; 13:10 Shine a Light on XLH (X-linked Hypophosphataemia) ; 13:20 Reforming Rare Diseases: Making the Rare Path the Right One; 13:30 Creating I:DNA; 13:40 Beyond Limits: Rare Men Talking Mental Health
14:15 - 14:45What Anthropology Taught me about my Rare DiseaseGeorgina Windsor, Cambridge UniversityEver wondered what ancient humans might teach us about health and disease? Anthropology helped Georgie understand the notion of a diagnostic odyssey, the complexities of genetics and adaptation, plus the shortfalls of modern medicine in treating patients as pathologies.
15:00 - 15:30Rare Youth MonologuesChelsea Wong, Katie Callaghan and Eddie Bartlett. Dr Lucy McKay, Medics4RareDiseases Sometimes we just need to stop and listen. Three young people will take to the stage to share their experiences of living with a rare condition in this unique spoken word performance. Followed by a chat facilitated by Dr Lucy McKay from Medics4RareDiseases.
16:30 - 18:00VIP RECEPTIONFollowing the public exhibition ...Invited guests only (pass required)
17:15 - 17:30Beyond the DiagnosisPatricia Weltin, Beyond the Diagnosis Patricia from 'Beyond the Diagnosis' joins us from the US to unveil a new portrait of a child in CamRARE's community. She'll share her story as founder of this art project, uniting art and science to raise awareness, educate, and inspire research in rare diseases
17:30 - 17:45The RiverJo Balfour, CRDN, Allison Watson, Ring20Research and Support, Shirlene Badger, IlluminaA short film of a patient group journey with Q&A. This film journals the path taken by one mother of a child with a rare condition and the power of a collaborative network to help a family achieve their dreams