I'm interested in research on "malignant hyperthermia" - is there an existing forum, or can one be created for others with the same interest?

This is a rather rare (i understand that approximately 1 in 2,000 have it), but very serious inhereted medical condition. If someone is mh positive and doesn't know it, they could have a severe reaction to certain types of anastesia used during surgery which causes the body temperature to rise rapidly, leading to death within a matter of minutes unless an antedote and/or ice blankets are available and used immediately - however, if the person doesn't know they are mh positive then the surgeon won't have the antedote and/or ice blankets made available during the surgery - and the only way to know if you are mh positive is by knowing if it is in your family history, or having a muscle biopsy to test for it, or lastly by being lucky enough to survive an mh episode during a previous surgery.

If a forum isn't appropriate or desireous, does anyone know of any existing websites that may be devoted to or include coverage of malignant hyperthermia research?