"The U.S. Food and Drug Administration today [Oct. 17, 2016] announced that it has awarded 21 new clinical trial research grants totaling more than $23 million over the next four years to boost the development of products for patients with rare diseases. These new grants were awarded to principal investigators from academia and industry with research spanning domestic and international clinical sites."https://rarediseases.info.nih.gov/diseases/browse-by-first-letter
Rare disease day in the U.S. is February 28, 2017. http://rarediseaseday.us/
"Rare diseases are not so rare: there are 7,000 rare diseases disorders that combined affect 30 million Americans–1 in 10 of us–and more than half are children.
People with rare diseases have tremendous unmet needs, including misdiagnosis, a long time to finally receive a correct diagnosis, and when they do, 95% have no treatment with ZERO CURES."