FSHD is a disease that receives very little attention by the scientific community, relative to other more recognizable diseases with a similar or lower prevalence. A good way to look at how much work is going on in a research area is to look at the number of articles that are published in scientific journals. This information can be obtained easily by searching the PubMed database.
A search of PubMed using the search terms facioscapulohumeral muscular dystrophy, Duchenne muscular dystrophy, amyotropic lateral sclerosis, and multiple sclerosis shows there are far fewer research publications for FSHD compared to these other diseases. I wanted to see if this was a trend that maybe used to exist, but has been corrected in recent years, or if FSHD research continues to lag behind, so I looked first for the number of publication in each area before 2010 (Table 1). This search indicates the level of research on Duchenne MD, ALS, and MS is about 10-fold, 18-fold, and 68-fold higher than for FSHD.
I looked next at the numbers of publications from 2010 to the present. As Table 2 shows, the situation has not improved. The level of research activity in FSHD remain significantly lower than that for Duchenne MD, ALS, or MS.