For many people, getting a diagnosis of a health condition or hearing about a health condition a loved one has is pretty unsettling. Finding out more about any serious medical condition is a high priority. One of the best ways to get up-to-date information is to visit one of the organizations that specializes in that particular condition. Typically, you'll find pretty much everything you need to know on the organization's website, often along with a moderated forum where people are discussing the condition.
Wikipedia has a page listing most such organizations, arranged by category:
http://en.wikipedia.org/wiki/Category:Medical_and_health_organizations_by_medical_conditionIt's a good place to start.