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Transforming rare science into treatments workshop

19th November, 2018 at 10:30 am - 5:00 pm

[Image description: Infographic showing details of the "translating rare science into treatments" workshop. The image reads: A Findacure #RareWorkshop. A day-long translational research workshop helping patient groups and academics drive research forward to deliver the treatments that patients need. Taking place on Wednesday 19th November in London. A Findacure event in partnership with LifeArc.]

How can patient groups help to transform rare science into treatments and successfully navigate the “translational valley of death”. 

Findacure, in collaboration with LifeArc, is delighted to announce its next workshop on translational research. The workshop will address a number of important issues designed to help patient groups and their academic and clinical collaborators understand how to turn laboratory science into effective treatments for rare disease patients.


10:00   Registration

10:30   Welcome

10:40   Translating translation
        – Catriona Crombie, Philanthropic Fund Manager, LifeArc

11:10   Delivering a translational research programme
          – Dr Chris Kingswood, Trustee, Tuberous Sclerosis Association 

11:40   Tea break

12:00   How can patient groups directly support a clinical trial?
            – Ciarán Scott, Communications Manager, AKU Society
            & Prof. Lakshminarayan Ranganath, Trustee, AKU Society 

12:30   Lunch

13:30   Funding a translational research programme
            – Dr Louise Jones, Head of Translation and Innovation, MRC

14:00   Delivering translational research programmes
            – Dr Pamela Tranter, Head of Translational Research Group, UCL

14:30   Comfort break

14:45   Group discussion

16:15   Panel Session

16:45   End of workshop and networking

Download the full programme here  

Anyone with an interest in rare diseases is welcome to attend and we encourage patient groups to invite members of their scientific and medical advisory boards. The workshop is free to register and lunch and refreshments will be provided. Findacure will reimburse travel expenses for rare disease patients, patient groups and charities, up to the total value of £75.00 per person, contingent upon the production of valid receipts. Read more on our expenses policy here. Please note, spaces at this workshop are limited. Therefore, we kindly request that you only sign up for the event if you are confident you are able to attend. If you have already registered and find yourself unable to make it, please contact [email protected].
With thanks to the funders of our 2018 Patient Empowerment Workshop Programme: AbbVieAmgenLifeArc and Novartis.


19th November, 2018
10:30 am - 5:00 pm
Event Category:


Mary Rose Roberts


Royal College of Paediatrics and Child Health, 5-11 Theobalds Rd
London, WC1X 8SH
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