RAREfest22 Talks Programme
Saturday 26th November 10:30 - 15:30Live 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
| Time | What's on | Speakers | Description |
|---|---|---|---|
| 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, CamRARE, 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 |