We cannot recommend a doctor who is familiar with PXE, unless you are looking for an ophthalmologist or dermatologist. Contact us to ask for one of these in your area.
Since there are over 7000 rare diseases, doctors cannot be familiar with all of these diseases. Furthermore, you might find a general practitioner or cardiologist who has seen a PXE patient or two, but every person is different, and you would not want a doctor to base your care on the few other cases he or she has seen.
Fortunately, the effects of PXE on the various organ systems of the body are similar to those produced by much more common conditions – so you need to find a doctor who is caring and listens and takes the time to become educated about PXE. He or she can read our medical bulletins and learn how to care for you. He or she can also consult us (we have gathered data on more than 1000 affected individuals) if necessary.