Description
This year, Rare Disease Day is on that rarest of days, 29th February, and to mark the occasion NIHR Cambridge BRC is hosting a free, online session on patient-centred rare disease research.
Join us over lunch (with your food!) from 12.30-1.30pm (BST) and find out more about for the journey from genes to mental health, co-designing research with the public and targeting novel therapies for children with neurodisabling disorders.
It’s a great opportunity to hear about rare disease research and hear from our speakers who will share their unique perspectives, knowledge and experience of rare disease patient-centred research. This will be followed by a panel discussion and Q&As from the audience
The NIHR Cambridge Biomedical Research Centre (BRC) is a partnership between the University of Cambridge and Cambridge University Hospitals (CUH) to support health research that makes a difference to the lives of patients. Collaboration and sharing expertise is central to how the BRC supports research, and this session highlights both BRC-supported and partner-supported rare disease research.
Speakers
Dr Katy Baker, Programme Leader at the MRC Cognition and Brain Sciences Unit, University of Cambridge. Honorary Consultant in Clinical Genetics at Cambridge University Hospital, and an affiliate Principal Investigator of the Academic Department of Medical Genetics.
Talk: ‘Rare Journeys from Genes to Mental Health’
Jo Balfour, Managing Director of CamRARE and Laura Cowley, Research Lead for the Patient Led Research Hub
Talk: ‘Turning Research on its Head- Co-Designing Rare Disease Research with the Public’
Dr Ben Marlow, Paediatric Consultant (Neurodevelopment) at Colchester General Hospital and Clinical Director of the Synapse Centre for Neurodevelopment at the East Suffolk and North Essex NHS Foundation Trust. He is the Children and Young Person Lead for NHS Suffolk and North East Essex Integrated Care Board, Chair of the East of England Community Paediatrics Group, and also sits on the Strategic Research Group for the British Academy of Childhood Disability.
Talk: ‘Targeting novel therapies for children with neurodisabling disorders’
Compère for the event:
Dr Amanda Stranks, Patient and Public Involvement/Engagement and Communications Strategy Lead, NIHR Cambridge Biomedical Research Centre
Who is this event for?
This free event is suitable for anyone who wants to find out more about how our rare disease research is being used to benefit patients. You could be a member of the public, a student at college or university, a carer, researcher, or healthcare professional – join us online.
No scientific or medical background needed – just a curiosity for rare disease research.
The talks will be followed by a chance to ask our expert panel your questions about rare disease research.
Find the event program here.
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