Our workshops provide practical, hands-on guidance about pertinent topics to rare disease patient groups and charities across the UK. Presentations are given by a mixture of experts and more experienced patient groups who share their advice and experiences.
We have a diverse audience at each event, which gives delegates an opportunity to learn best practice from one another – not only from presenters – and feel part of a wider rare disease community. We also record each workshop and share the videos freely on our online portal and YouTube channel.
Rare diseases can impart a significant financial strain on patients and their families, due to high health costs and loss of employment. We therefore do not charge patient advocates to attend our workshops and we reimburse travel* to ensure those who require support are able to attend, regardless of their financial situation.
The workshop will take place on Friday 8th September, from 10:30am to 3:30pm at the Royal Society in London, and will explore the different ways patient groups can work with pharmaceutical and biotech industries. The day will feature four talks, which will outline; when, where and why patient groups interact with industry, making funding partnerships with industry, advising industry, and partnering with industry for research. The afternoon will also include time for networking and a structured group discussion on patient groups’ experiences working with industry, the barriers they have faced, and solutions for the future.
The workshop is free to attend for all rare disease patients, advocates and charities.
*Findacure will always reimburse expense claims up to the total value of £75.00 per person, contingent upon the presentation of valid receipts. You can read our Expenses Policy in full here.