NIHR ‘Think Research’ Rare Diseases Patient Day: Follow-Up

Put motivated people together and you can expect a lot of questions and debate. And that’s what happened when 150 people representing more than 70 rare diseases travelled from all corners of England to central London for the Rare Disease Patient Day, hosted by us, the NIHR Cambridge Biomedical Research Centre and the NIHR BioResource for Translational Research that took place in March this year.

Here you can find out what was discussed, and the questions raised and responses given.

Full agenda from the day.

Photographs from the day

Training Sessions, Presentations and Resource Sheet

Attendees choose from one of four one-hour sessions, repeated again after lunch so they could attend two different sessions over the course of the day. Please find a resource sheet and presentations below.

• Presentation: Data and Research
• Presentation: Genomics
• Presentation: Social Media
• Presentation: Working with Industry
• Download a resource sheet with useful website link’s

Presenters and Attendees on the Day                                                                                                                  

Click on the list of Rare Diseases represented at the event

The day opened with a lively introduction from Vicky Ford, MP and Joint Chair of All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions, followed by lay-friendly presentations from Prof Patrick Chinnery. This was then followed by guest speakers: Prof Allan Colver, Dr Patrick Yu Wai Man, Maria Kokocinska, Janet Tuberville-Greenley, Dr David Adlam, Rebecca Breslin, Prof Paul Gissen and closed with Prof John Bradley. Presenters’ biographies

Feedback and Questions

Click to view Glisser engagement

Download the responses to questions raised on the day

Download the feedback (excel) from the Training Sessions

View Survey Monkey event feedback

Download social media breakdown and view some of the tweets

Click to view Vox pops

If you require any further details about the day, please contact Georgina Norris on email: gan23@medschl.cam.ac.uk.