If you have been diagnosed with a rare disease, I'm sure that at some point you have met a nurse or a doctor who has never heard of your condition. Doctors and nurses have a very stressful and essential job and we would be lost without them. But they are human. And no one can be an expert in every condition or disease that exists. Which is why it's a good idea to be an active member of your health care team and advocate for yourself to ensure your needs are being met.
Once you have the diagnosis, do some research. Find the best specialists near you and ask to be referred to them. Ask your doctors, hit the internet, join a support group and reach out to others who have your disease. Ask around and find the experts! They are the ones you should put your trust in.