RAREfest24 Talks Programme
Saturday 23 November 10:30 - 15:00Join live talks, panel discussions, monologues, and films in the Chamber Room, across from the exhibition hall.
Take a break from the exhibits to hear from opinion leaders in science and research, alongside creators of life-changing technology and powerful patient voices.
RAREfest24 Saturday Auditorium Programme
| Time | What's on | Speakers | Description |
|---|---|---|---|
| 10:30 - 11:00 | Panel Discussion: Rare and Hot – Rare Diseases, Climate Change, and Sustainability | Jo Balfour, Managing Director - CamRARE, Sanjay Sisodiya, Professor of Neurology - University College London; Deborah Richards, UK General Manager -Alexion, Astra Zeneca Rare Disease and Dr Peter Fish, Mendelian | This panel will explore the intersection of climate change, healthcare sustainability, and its impact on people with rare diseases. As extreme weather events and rising temperatures increase, how do we address the heightened vulnerabilities of those with rare conditions, especially those sensitive to heat? The healthcare industry, a major contributor to climate change, faces a critical challenge: how is it reducing its environmental impact while providing essential care? The rare disease diagnostic odyssey, often resulting in misdiagnosis and unnecessary treatments not only burdens patients but also increases the healthcare footprint, complicating sustainability efforts. How can healthcare systems evolve to better support rare disease communities in a warming world? Join us as we dive into these pressing questions and explore potential solutions. |
| 11:10 - 11:45 | Launching the new Rare Disease Research Network | Laura Cowley - Patient-Led Research Hub/RDRN, Georgie Windsor - RDRN/CamRARE, Allison Watson - CEO Ring20 Research and Support, Loretta MacInnes - Trustee, CamRARE/RDRN | Join us live for the much-anticipated launch of the new patient-driven Rare Disease Research Network (RDRN) platform. Funded by NIHR and co-created by the Patient Led Research Hub and CamRARE, in partnership with the rare disease community, this platform is a safe place for patients to share their reserach ideas and priorities and to collaborate with researchers to realise them. Join the platform too and help us turn research on its head! |
| 11:55 - 12:25 | Talks: Rare Youth Monologues | Dr Lucy McKay, CEO - Medics4RareDiseases: Linseigh Green, Actor and Patient Activist; Ellie Cornwell, Ambassador- CamRARE ; Emma De Pretis, Ambassador - 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. |
| 12:25 - 12:35 | Film Screening: Connections | Timothy Syndrome Alliance UK | In this film, a collaboration between the Timothy Syndrome Alliance (TSA) and Cardiff University, we explore the importance of connections between individuals and families with lived experience of CACNA1C-related disorders (CRDs) and Timothy Syndrome (TS), academics, clinical teams and researchers. The more links we make, the stronger our network becomes and the faster we grow our understanding of our rare disease. Without connections, we can’t grow or learn. |
| 13:10 - 13:20 | Mountains We Carry: Mountains We Climb | Save One Life in partnership with Sobi | This tells the story of seven people with haemophilia from across Europe as they challenge themselves to scale the highest peak in the Alps. The journey towards the summit is intense, and the challenges these climbers have overcome showcase the amazing capabilities within the bleeding disorder community. |
| 13:20 - 13:50 | Talk: Will I Cure my Own Rare Disease? | Max Fisher - Senior Research Associate, Vianautis | Max introduces us to their collection of rare diseases, their role as a senior research associate in nanomedicine, and how their disabilities impact their work. Max explores the often unkind language used in STEM when discussing disabilities, questioning why we talk about them as something that always needs to be fixed. Max also reflects on the recent news of a gene therapy "curing" deafness, delving into the nauances and complexity of the coverage of this breakthrough. Would Max cure their own rare disease? Would they give up their disabilities? Join Max for an honest conversation on these thought-provoking questions. |
| 13:50 - 14:00 | Film Screening: The Tale of the Blind Chocolatier | Stuart Hann | Discover the inspiring story of Stuart Hann, a talented pastry chef from the English Lake District, diagnosed with the rare eye condition Leber's Hereditary Optic Neuropathy (LHON) in 2015. Despite becoming legally blind, Stuart has continued to thrive in a 2 Rosette kitchen, proving that his passion and skills remain undiminished. Now following his own dream, he has opened "The Blind Chocolatier," a chocolate shop in his hometown of Staveley. This film showcases Stuart's journey of perseverance, resilience, and creativity in the face of adversity. |
| 14:05 - 14:40 | Panel: ART TRAnslations - Translating Science Through Art | Dr Catriona Crombie, Head of Rare Disease - LifeArc; Dr Gavin McStay, Senior Lecturer - Liverpool John Moores University; Charlotte Morrison, Artist; Dr Kate Baker, Assistant Professor of Clinical Genetics, University of Cambridge; Donna McLuskie, Artist - Hidden Creatures | RAREfest24 will be home to the LifeArc sponsored, CamRARE supported ART-TRAnslations exhibition for the weekend, a unique collaboration which offers different perspectives on research into rare diseases. By uniting the creativity of artists with cutting-edge science conducted by researchers, this exhibition aims to illuminate the complexities and challenges inherent in understanding and treating rare conditions. The project not only showcases the beauty and rigour of scientific pursuit but also vividly brings to life the experience of people living with rare conditions, highlighting their journeys and the impact of these conditions on their lives. Join reserachers and artists to hear the stories behind their artwork collaborations. |
| 14:40 - 14:45 | Film Screening: "Lowe Syndrome & Me" - A Unique Collaboration | Gurdon Institute | This powerful film series "Lowe Syndrome & Me," is a unique collaboration between researchers, patient families, and Lowe Syndrome associations, with the support of the Gurdon Institute public engagement team. This series provides an intimate glimpse into the daily lives of those living with or caring for someone with Lowe Syndrome, revealing the personal stories, challenges, and triumphs of patients, caregivers, and advocates. Through these shared experiences, the film bridges the gap between research and real-life, showcasing the strength and resilience of this incredible community. |