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.
Our next workshop will take place on Wednesday 28th March and will focus on developing online communications for rare disease patient groups. Throughout the day, attendees will hear talks on: communication tools and platforms, developing a communications strategy, managing online communities, and communicating online in compliance with GDPR. The workshop will also include two breakout sessions which will guide attendees through establishing their own communications strategy, and help patient groups set up or improve their social media communications.
Registration is free and can be completed here.
*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.