This may seem a little wacky, but my sister, who also has an autoimmune disease sent this article to me today. https://ancavasculitisnews.com/2020/03/03/elsevier-opens-books-articles-to-rare-disease-researchers-starting-rare-disease-day/. Basically, it says “statistics indicate that about 95% of rare disorders, which impact about 300 million globally, have no approved treatment. For many of theses diseases, diagnosis alone, can be challenging. In addition, many patients find it difficult to access information about their disorder and quality of healthcare.” Researchers may have learned about these diseases, but it hasn’t filtered down to your average doctor.