Think Research! Rare Diseases Patient Day

="" 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 this statements to be displayed at the event and for sharing on social media. We will also pass on 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) Friends House, Euston

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 180 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 54, Level 5, Box 406, Cambridge Biomedical Research Campus, Hills Road, Cambridge, CB2 0QQ