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 22nd November, from 10:30 – 15:30 at White & Case in London. The workshop will focus on the topic of accessing medicines for rare disease patients, and will feature four talks which will outline the challenges in access, the options available to patients and the role patient groups can play, and include case studies on on and off label drug access. The workshop will also include lunch, opportunities for networking and a structured group discussion.
This workshop is free to attend for anyone with an interest in rare diseases. You can register for the workshop 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.