The inspiration for this site comes from the unusual coincidence that I was trained as a clinical geneticist and I have a daughter with an unknown genetic syndrome. The community of clinical geneticists have been diligent and helpful but a definitive diagnosis remains elusive. It is very possible she has a new syndrome but despite my efforts, the molecular (or DNA) variant causing the syndrome is not known with certainty though I have identified a candidate. Were I not a physician trained as a geneticist,  it is likely my daughter’s condition would be lumped together with other patients in a category of heterogeneous but similar clinical conditions. This is the standard and respectable way that physicians deal with novelty.  It is a way station on the path to some greater understanding of human biology.  It takes the trained eye to spot the uniqueness of a case, sometimes a lucky scientific insight, or simply the tincture of time for science to catch up with the human condition.  In all cases, the question at hand -- what does she have --  has to be asked and re-asked and that is best done of everyone. This site allows that open question to hang out in the public begging unapologetically for an answer.