“If someone has a really, really rare condition we carry out research to understand more in advance. We often use an online resource for additional information but if the condition is not covered we would speak to colleagues who may have more experience of that particular condition.”

“Awareness of rare diseases is important for everyone and that includes our department. Our knowledge at the moment is very much that we will treat that patient and send the sample away to a referral laboratory but any more than that and it kind of stops there - this is something that we will be addressing.”

“When a child comes to us with a rare disease it certainly makes it more challenging. It is nice though to see them come in and get the help they need to lead as much of a normal life as they possibly can.”

“We find that rare diseases can cause a number of challenges. The first might be that the individual with a rare disease is often the expert in their condition, whereas, the medical professional that they deal with may not have that in depth knowledge of that specific condition.”

“Whenever I see a patient who is new to me I always take a step back and go right ok so how is this diagnosed? Who came up with it? And if it doesn’t feel right to me then I’m happy to challenge it and to pursue other diagnostic avenues.”

“‘From my perspective the best way to deal with a rare disease is to try and find people who have experience in it. There are so many rare diseases you can’t be experts in all of them but you can usually find someone with more experience if needed.”

“As a chaplain one of the main differences is that you realise very quickly that this is not your space. With the families and us, we are all visitors. When you work in a church or mosque it might be yours but you come and work in a hospital it is not your place. It is really very different.”