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SUMMARY:The power of the patient voice in clinical research
DESCRIPTION:Nobody understands your community better than you do.\n			\n				\n				\n				\n				\n				Patient groups know what matters most and what meaningful research should look like. Join this workshop to gain the tools and confidence to bring that knowledge into the world of clinical trials.\n			\n			\n				\n				\n				\n				\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n			\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n			\n			\n				\n				\n				\n				\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				With 95% of rare diseases still lacking an approved treatment\, patient groups are a driving force for change. They bring the lived experience and insight needed to shape research that reflects the realities and priorities of their communities. Yet for many\, the world of clinical trials can feel complex and out of reach.\n			\n			\n				\n				\n				\n				\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n					\n                \n                \n                \n                    \n                \n                \n                \n            \n				\n			\n			\n				\n				\n				\n				\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				About the workshop\n			\n			\n				\n				\n				\n				\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				This three-part\, online workshop is designed to give rare disease patient group leaders the knowledge and confidence to engage with clinical research and make their voices heard. \nAcross three two-hour interactive sessions\, we’ll explore the unique challenges of rare disease trials\, share practical solutions\, and highlight where patient groups can add value. \n			\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n			\n			\n				\n				\n				\n				\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				We will cover\n			\n				\n				\n				\n				\n				Session 1 – Clinical trials in the rare disease context\n18th November\, 10:00 – 12:00 GMT\n			\n				\n				\n				\n				\n				Learn more:\n				This session will provide an accessible overview of what clinical trials are and why they are important. It will cover key concepts such as trial phases\, protocols\, and the role of regulators\, as well as the unique challenges and opportunities that arise when conducting research in rare diseases. Attendees will gain a clear understanding of how trials work and the factors that make rare disease research distinct. \n			\n				\n				\n				\n				\n				Session 2 – The patient voice in trial design\n19th November\, 10:00 – 12:00 GMT\n			\n				\n				\n				\n				\n				Learn more:\n				Designing trials for rare diseases comes with unique challenges\, from small patient populations to defining outcomes that truly matter. This session will highlight how patient groups can play a crucial role in shaping research so that it is not only scientifically robust\, but also meaningful\, inclusive\, and practical for the people it aims to serve. \nWe will hear from The Lily Foundation on the important work they are doing in this area!\n			\n				\n				\n				\n				\n				Session 3 – The patient voice in trial delivery and beyond\n20th November\, 10:00 – 12:00 GMT\n			\n				\n				\n				\n				\n				Learn more:\n				This session will explore how patient groups can contribute during and after a trial. It will cover ways to support participants\, engage with researchers\, and ensure communities’ voices continue to be heard throughout the research process.\n			\n				\n				\n				\n				\n				\n				\n				\n					\n                \n                \n                \n                    \n                \n                \n                \n            \n				\n			\n			\n				\n				\n				\n				\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				Why join?\n			\n				\n				\n				\n				\n				\nBuild your understanding of how clinical trials work\nLearn practical ways to influence and support research\nHear real-world examples of patient involvement in rare disease trials\nConnect with other patient group leaders facing similar challenges\n\nRegister below to secure your FREE place!\n			\n				Register\n			\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n			\n			\n				\n				\n				\n				\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				Important Notice: Our ticketing provider\, Eventbrite\, now allows you to confirm tickets before completing the order form on the next page. To finalise your booking\, please ensure you fill out the form in full after paying your deposit. \n			\n				\n				\n				\n				\n				\n				\n				\n					\n                \n                \n                \n                    \n                \n                \n                \n            \n				\n			\n			\n				\n				\n				\n				\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				Meet the speakers\n			\n			\n				\n				\n				\n				\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n			\n				\n				\n				\n				\n				Christa Van Kan\n			\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				Christa van Kan is a clinical trials expert with 25+ years’ experience across multiple diseases\, including rare and paediatric indications. A co-founder of PSR Orphan Experts and former Director of Clinical Operations\, she now consults for small pharma and biotech\, specialising in vendor selection\, oversight\, and stakeholder management ensuring the successful execution of clients’ clinical trials. \n			\n			\n				\n				\n				\n				\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n			\n				\n				\n				\n				\n				Melita Irving\n			\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				Dr Melita Irving is a clinical geneticist at Guy’s and St Thomas’ NHS Foundation Trust\, specialising in genetic conditions across all ages with a focus on skeletal disorders. She leads multidisciplinary paediatric clinics in skeletal dysplasia and achondroplasia\, serves as chief investigator on related clinical trials\, and authored the Haynes Manual book Human DNA – Understanding Your Genetic Code. \n			\n			\n				\n				\n				\n				\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n			\n				\n				\n				\n				\n				Katie Waller\n			\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				Katie Waller is Head of Patient Programmes at The Lily Foundation and a former paediatric and research nurse in early-phase trials. She now works across patient support\, research\, policy and advocacy\, serving as PPIE lead for the LifeArc Centre for Rare Mitochondrial Disorders\, and leading IMPACT\, the Lily Foundation’s patient involvement group. \n			\n			\n				\n				\n				\n				\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n			\n				\n				\n				\n				\n				Maria O’Hanlon\n			\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				Dr Maria O’Hanlon is Research Manager at The Lily Foundation. Before joining Lily\, Maria completed a PhD in biology focusing on the role of mitochondria in Parkinson’s disease. Inspired by a master’s project in mitochondrial disease\, she joined the Lily Foundation in January ‘24 and hasn’t looked back. As a Research Manager\, she looks after all things Lily research (portfolio\, international scientific efforts\, research comms)\, leading ‘The Research Zone’ hub. \n			\n			\n				\n				\n				\n				\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n			\n				\n				\n				\n				\n				Lee Aiyegbusi\n			\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				Prof Lee Aiyegbusi is Professor of Patient-Centred Research and Deputy Director at the Centre for Patient-Reported Outcomes Research (CPROR)\, University of Birmingham\, UK. He leads the patient-reported outcome (PRO) work package of the LifeArc Centre for Acceleration of Rare Disease Trials\, co-leads the PRO theme of the Birmingham NIHR BRC\, and serves as PPIE lead for projects including the NIHR Blood and Transplant Research Unit in Precision Cellular Therapeutics (BTRU-PCT). \n			\n			\n				\n				\n				\n				\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n			\n				\n				\n				\n				\n				Pan Pantziarka\n			\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				Dr Pan Pantziarka is Director of Drug Repurposing at the Anticancer Fund\, working on drug repurposing in oncology – from drug candidate identification to clinical trials and health policy work. Pan is also a member of the Executive Committee of FOSTER (Fight Osteosarcoma Through European Research). He also Chairs and is the Co-founder of George Pantziarka TP53 Trust – the UK organisation for people with Li Fraumeni Syndrome. \n			\n			\n				\n				\n				\n				\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n					\n                \n                \n                \n                    \n                \n                \n                \n            \n				\n			\n				\n				\n				\n				\n				Deposit system\nRegistering for this workshop will require paying a refundable deposit of £15 upon registration. This deposit will be kept safe in Eventbrite until after the training has been completed. Following the event\, if you have attended and signed in to 2 out of 3 of the sessions\, you will get your full deposit back. \nWe understand that circumstances can change\, especially in the rare disease community. Should you register for the event and realise you can no longer attend please let us know as soon as possible. We will endeavour to refund your deposit in full provided reasonable notice is given. Reasonable notice for this event is no later than 3 working days before. \nFind out more about our deposit scheme here. If you have any questions\, please contact projects@rarebeacon.org.\n			\n			\n				\n				\n				\n				\n			\n				\n				\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				Please note: the ticket window may take a few seconds to load. 
URL:https://www.rarebeacon.org/event/the-power-of-the-patient-voice-in-clinical-research/
LOCATION:Online via Zoom
CATEGORIES:Online,Workshop
ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2025/09/Patient-voice-fb-graphic.jpg
ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org
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