Not long ago the 200th case of PURA syndrome was diagnosed globally. This is momentous news for all of us! And I welcome this news as great progress in helping to support our 'Rare Family'. It increases our ability to support research programs and our ability to better help and serve you, our families, as well as your doctors and care teams. Last year I made several posts related to Rare Disease Day: on Linked-in, on Facebook, and at my day-time work. I was bringing attenti