Rare Disease Day-Patient Centred Research

Rare Disease Day highlighting rare disease research with a patient focus.

Our speakers and rare disease parent shared their unique perspectives, knowledge, and experience of rare disease patient research before a panel discussion with audience Q&A.

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