News & Events

Rare disease patient portraits

Last Reviewed 2/07/2019

By Evan Wroe

At the end of July we will have a photographer working with us, to help us expand the range of pictures we can use for our online media, design work and printed publications. To ensure the images we use best represent the community we serve, we are looking for rare disease patients and carers to volunteer to have their photograph taken. These could be taken at your home, or in a local cafe, park, library or other meeting place of your choice. If you would like to participate you need to:

  • Be available during the day (between 09:00 – 17:00) in the week of 15-19 July (exact dates will depend on your availability),
  • Be based in or around London,
  • Be happy for photographs of you to be used in our future publications, on our social media channels and on our website.

In particular we would welcome expressions of interest from patients and carers of black and minority ethnic backgrounds, to ensure our images reflect the diversity of the rare disease community. In return for your time you will receive high-quality photographs of yourself for your personal use. 

If you are interested in participating, please fill in the form below, and we will be in touch shortly.

Rare disease patient portraits

  • We need a rough idea of where you are based to know if it is feasible to get to you. We will contact your for a home address or alternative meeting address if you are chosen to participate.
    We will arrange a time to visit you within any of the times you pick here. This slot will likely be a 30 minute time window, between the hours of 09:00 - 17:00, not the whole morning or afternoon.
  • We are interested in knowing a bit more about you. What rare disease are you, or the person you care for, affected by?

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