Patient group training survey 2019
Findacure is a UK charity that is building the rare disease community to drive research and develop treatments. We are here to revolutionise the world's understanding of rare diseases and the devastating impact they have on people's lives.

At the core of our work are our patient group training projects, where we work directly with patient support groups, to give them the skills to professionalise their work, and the confidence to recognise their own expertise in their rare conditions.

Since 2014, we have run a series of patient training workshops focusing on four key areas: building their charities, raising awareness for their rare conditions, providing support to patients and families, and getting ready for research. At the end of 2016, we ran our first patient group survey, and as a result of your feedback, changed the way we deliver our workshops.

Now we are turning to you again, as patient advocates, to ask for your honest opinions and understand your on-going need for our training.

We would greatly appreciate you completing the following survey, which should take no more than 10-15 minutes to fill out. All responses will be anonymous and will be used to shape our continuing work. Responses may also be used in our project reports, which may be shared with funders, and in external materials.

If you have any questions or concerns, please contact

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