Hello Ulla,
I heard about something yesterday at the AAMDSIF conference that may interest you. It's an MPD Research Consortium and info is at
http://www.mpd-rc.org. Although mostly linked to U.S. and European centres, McGill is a participating Canadian centre under Dr. Jaroslav Prchal. Although this is not in Ontario, perhaps they could connect you with someone locally. Also, there are patient links on the website which may also be of interest. I don't know much about MPD but hope this info is helpful.
Best, Chris.