Imagine going to the doctor and being told that you have a rare lung disease—that you are one in a million. Any feeling of being special is rapidly replaced by one of frustration. Your general practitioner has never heard of the condition, your specialist has seen one case previously, and when you decide to seek out the medical literature you find that descriptions are largely based on reviews of five patients from the 1940s. When you have symptoms not described in the textbook no one can confirm whether they are “normal” or not. Worst of all, perhaps, is the isolation—you cannot commiserate or discuss your problems with other patients. As one patient said after being told that she had …