I spent this morning hearing my second year medical students read and discuss their reflective essays, all of whom described how much they had learned from patients while not one wrote about anything they had learned from me. I counted it as a successful few weeks of patient centered medical education. The following blog is a great example of ways in which they might, I hope, carry their experiences through the rest of their careers.
For some background to patient-centred medical education, this paper is one of the best I have read, especially the points about role-modelling being something that medical students and trainees can do in relation to patients, rather than by mirroring other doctors http://ltc-ead.nutes.ufrj.br/constructore/objetos/Students%20Learning%20from%20Patients%20Let%92s%20Get%20Real%20in%20Medical%20Education.pdf
You may gather from the title of the blog that the condition my daughter is diagnosed with is not that common. There are about 500 people with Emanuel Syndrome (I’m going to refer to it as ES from now on) in the World, in Sept 2015 when I first did the (crude, non statistical) sums that meant 1 in 14 million people worldwide with ES.
One of the challenges that the rarity of ES brings is there there are very few Doctors, Speech and Language Therapists, Physios or Teachers who have ever encountered it. Those who have can have usually met very few. When I meet professionals at Lucy’s appointments their approach varies. In my experience as a parent and formerly as a healthcare professional I think there are key things that help when dealing with something new and rare that help to get the best support in place for…
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A Better NHS 
Yes, we have to learn how to respond when someone comes in with a “label” that we know little about. Some doctors refer to people with “rare disease” as Zebras, and seem to feel that they should always go to specialist clinics, thus adding to the burden of being a patient. Such people need help, and we can do much from general principles. I wrote a paper about this for my learners. http://www.cfp.ca/content/62/8/620.full