One of the challenges that patients with rare conditions face is dealing with doctors who are both unfamiliar with the condition (understandable) and dismissive of any attempts by the patient to explain the condition (not so understandable).
Usually, there isn't anything we can do about it except move on to another doctor. But what if you could meet a doctor in training, someone who isn't set in his or her ways, and who's open to learning about your challenges?
You can! Global Genes has a contest for first and second year medical students that involves getting to know a rare family and writing an essay on the experience. You can read more about it here: http://www.globalgenes.org/coxprize
If you're interested in being the rare family for one of those students, you can sign up here: https://globalgenes.org/coxprize_familyrequest There, you'll find a list of locations where they're searching for a family to match with a student. If your location isn't listed, check back, because the list is updated weekly.