In support of #RareDiseaseDay we are launching a series of blog posts to illustrate the length of time it takes for a child living with a rare disease to receive a diagnosis. The process will be reviewed, from the parent’s perspective looking at the initial symptoms and beyond. Follow the link to find out about Tom. https://onyx-notsorare.tumblr.com/ Stay tuned over the next couple of weeks to find out what happens. #notsoRARE Engel PA, Bagal S, Broback M, Boice N. Physician and patient perceptions regarding physician training in rare diseases: The need for stronger educational initiatives for physicians.

Journal of Rare Disorders, 2013; 1(2): 1-15.