Image: Peter Shone [CC BY-SA 2.0] via Wikimedia Commons
Matthew Hurley, clinical research fellow at the University of Nottingham, shares his story of raising funds for Cystic Fibrosis Unite, an online portal for engaging patients in CF research.
Why Cystic Fibrosis Unite?
The problem with CF is that people are highly susceptible to bacteria that are highly transmissible between individuals, so you can never have more than one person with CF in a room at any one time. That has historically prohibited meetings between people with CF. So the primary aim [of Cystic Fibrosis Unite] was to hold meetings in a way that overcomes the problems of cross-infection but also facilitates real interactions between people with CF and researchers, with both getting something out of the relationship. People with CF can get up-to-date information from the experts, and researchers can get a patient’s perspective of their work and also input into the design of future work and trials.
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