You will likely have to use Google to locate things like nearby treatment centers and support groups. Below are some resources that may help you get started in locating national advocacy groups, services, and programs.
Government website. Find your disease in the list for information including: healthy living with the disease and a directory of national resources for the disease.
Government website. After finding the page about your disease, you can find information including how to find an expert, genetic counseling for parents, and patient handouts.