Thirteen Years Have Passed … But There is Still a Dreary Reality for the Type 1 SMA Community! (Part I)

Thirteen years have passed since establishing the first Rare Disease Day.

A truly “rare day” — it was February 29 of 2008. This was also the day marking the anniversary of passage of the 1983 Orphan Drug Act in the U.S. Rare Disease Day calls attention for Decision and Policy Makers to make…