Health committee  I'm not involved with any disease in the nephrology clinic with stem cell treatment currently. Some of the speculation was that this type of treatment, if it were successful, wouldn't be available in a Canadian centre. It may be, but one of the worries is that if you save a lot o

Health committee  It's certainly a difficult issue. I would hope that if a patient is in a clinical trial, once that clinical trial is over, the pharmaceutical company would continue that medication to that patient. I think it would be very difficult if that didn't occur. For the trial for delaye

Health committee  Yes, you're correct that it is rare. We have in the clinic about 18 patients, which is probably more than you would expect from the supposed frequency of the disease. It's actually not too difficult to make the diagnosis once the patient gets to the nephrology clinic, but sometim

Health committee  Yes. I have a conference here that I would like to get to. It starts at 10 o'clock.

Health committee  Mr. Chair and members of the committee, thank you very much for inviting me to speak to you about rare diseases and the experience of looking after several patients with rare diseases. By way of introduction, I'm a pediatric nephrologist originally trained in the U.K. and then a