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The everyday impact of rare diseases: supporting your patient community
17th January at 10:00 am - 4:00 pm
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.
10:40 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
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