Bullshit. Anyone with a scientific background and a vested interest in studying a specific uncommon disease will likely know more about it than most GPs. General Practitioners are just that - generalists. They know the basics, plus enough to refer patients to an appropriate specialist. It's unreasonable to expect them to be well versed in every single obscure condition that a new patient could possibly have, and it's a naive appeal to authority to state that they automatically "know better" due to having a medical degree.