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The everyday impact of rare diseases: supporting your patient community

17th January at 10:00 am - 4:00 pm

[Image description: Photograph of someone talking with their arms stretched as though emphasising how big something is.]

Findacure is delighted to announce its first training workshop of 2019, which will focus on how patient groups can help support their patient communities through the everyday impact of living with a rare condition.


10:00   Registration

10:30   Welcome

10:40   Contact: how we support families with rare conditions
        – Rachel Gibson, Rare Conditions Officer, Contact

11:25   Discussion session: how can patient organisations help their community access services

12:15   Lunch

13:15   Encouraging self-management in young people with haemophilia
            – Laurence Woollard, Director, On The Pulse Consultancy

13:45   Supporting your patient community
            – Lesley Harrison, Patient Support Manager, AKU Society
              & Ann Kerrigan, Patient Representative, AKU Society

14:30   Activity session: developing a support project

16:00   End of workshop and networking


Anyone with an interest in rare diseases is welcome to attend. The workshop is free to attend 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].


Mary Rose Roberts


Hamilton House
Mabledon Place
London, WC1H 9AZ
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