Rare Disease Day webinar – 29 February
There are more than 300 million people worldwide living with a rare disease and this year, Rare Disease Day falls on that rarest of days, 29 February. To mark the occasion, the NIHR Cambridge BRC is hosting a free webinar highlighting patient-centred rare disease research.
This public webinar will explore researching rare conditions, from genes to mental health, co-designing a research study with members of the public and targeting novel therapies for children with neurodisabling disorders.
You will have the opportunity to hear from four speakers who are working to make a difference for patients living with a rare disease and a chance to put your questions to the panel.
Join us over lunchtime, 12.30-1.30pm, for this exciting opportunity to hear about the latest research from our speakers who will share their unique perspectives, knowledge and experience of rare disease patient-centred research.
Book your ticket
The event will be held online on 29 February, 12.30-1.30pm. Tickets are free and all are welcome. Book your place: https://bit.ly/RDDbrc
- 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