Think Research! Rare Diseases Patient Day – cancelled
Cancellation of ‘Think Research!’ Rare Disease patient day – 26 March, Friends House, London
Due to the recent coronavirus outbreak in the UK, it is with the greatest reluctance that the NIHR BioResource has decided to cancel this event. We have a duty of care to all our attendees and volunteers and we feel that holding a national event in the current climate would not be suitable.
We hope to reschedule the day for a later date.
If you have booked to attend this event, you should have received an email from event organiser Georgina Norris explaining the reasons for the cancellation and what to do next.
If you have not received an email, please contact Georgina at your earliest opportunity.
Details of the planned event are below, we will update this information in due course.
Date: Thursday 26 March, 2020 Time: 10.00am to 4.30pm
Venue: The Light, Friends House, 173-177 Euston Rd, Kings Cross, London NW1 2BJ
Help make our Rare Diseases Patient Day a success!
The event is run by NIHR BioResource for Translational Research. The aim of the day is provide insight and training in aspects of Rare Diseases research, as well as information-gathering and networking opportunities.
Who will be speaking and facilitating on the day?
View the programme for the day Think Research Agenda– Please note content may be subject to change.
Can you give me further details about each session? (click to see information)
Attendees will select an individual session to attend in the morning and a different session in the afternoon.
Session 1: Communicating rare disease stories and research
Session 2: Research using health data – promises and privacy
Session 3: Keeping up-to-date with the latest research
Session 4: What makes a good research question?
Patient Statement form
Download information about how to provide a Patient Statement for the event. We will format these statements to be displayed at the event and for sharing on social media. We will also pass on the statements to research funders and organisations involved in rare disease research, in order to help shape rare disease research strategy.
How do I find the venue? (including details about the venue’s accessibility)
Download travel guidance here getting to Friends House
Please find information on the venues accessibility
Hotels partnerships hotels and surrounding hotels
Please note we are unable to cover travel expenses for this event. If you have extenuating circumstances please contact the organiser
Can I supply literature about our Rare Disease/organisation for the event?
We will be handing out conference bags for the event. if you would like to include literature from your organisation in these bags, please send up to 150 copies to the organiser’s address below. The deadline is close of business on Friday 13 March 2020. Each organisation is limited to one item of literature (or example leaflet or report), under A4 in size. Surplus literature will be placed on a generic information table in the East Lobby.
Who is invited and how do I contact the organiser?
The event is by invitation only. We are inviting two representatives from each Rare Disease theme we support. This applies to rare disease patients, carers, patient representatives from support groups, charity or organisation and rare disease patients without a diagnosis. Please contact the organiser if a rare disease representative would like to receive an invitation, along with their name, email and affiliation.
Organiser Contact Details
Georgina Norris, Patient and Public Involvement Coordinator, Cambridge Biomedical Research Centre
T: 01223 254608
Address: Barton House, Flat 44, Level 4, Box 406, Cambridge Biomedical Research Campus, Hills Road, Cambridge, CB2 0QQ