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 9th June, from 10:30am to 3:30pm at the National Council for Voluntary Organisations in London, and will provide an A-Z overview of setting up a patient group. The day will feature four talks on the most important aspects of setting up a patient group; good practice and operating policies, budgeting, building a strong team, and legal structures. The talks will be followed by a panel discussion session and a structured group work session to support attendees to plan their own family / information day. We are pleased to announce this workshop will be run in collaboration with Genetic Alliance UK.
The workshop is free to attend for all rare disease patients, advocates and charities and Findacure will reimburse all UK travel expenses for these individuals.