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RAREfest22 Talks ProgrammeSaturday 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.
RAREfest22 Saturday Talks Programme
|10:30 - 11:30||Genomics! The Musical! Rare Disease Special||Rishi Nag, Singing Science||A 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 - 12:00||Finding a Needle in a Haystack||Amanda Pichini, Genomics England; Kate Downes, East Genomics; Peter Fish, Mendelian - hosted by medical students Angela Lochmueller, and Lydia Seed||Experts 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 - 12:45||DNA is the Blueprint. But for What?||Dr Evan Reid, CIMR||Rare 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 - 14:00||Rare Films||Tristan and Cam RARE; Koyowa Kirin; Alexion Astra Zeneca Rare Disease; Felicity Boardman, University of Warwick; David Ross||13:00 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 - 14:45||What Anthropology Taught me about my Rare Disease||Georgina Windsor, Cambridge University||Ever 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 - 15:30||Rare Youth Monologues||Chelsea 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 - 18:00||VIP RECEPTION||Following the public exhibition ...||Invited guests only (pass required)|
|17:15 - 17:30||Beyond the Diagnosis||Patricia 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 - 17:45||The River||Jo Balfour, CRDN, Allison Watson, Ring20Research and Support, Shirlene Badger, Illumina||A 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|