Two showings of RARE, a feature documentary that provides a closer look at the relationship between patients, advocacy groups and researchers involved in developing new treatments for rare diseases has just been aired in the US.
It is a really interesting documentary and highlights the importance of patient organisations like BUS being fully involved in the research process. In fact, if you see the documentary, it is strangely reminiscent of the development of BUS!
If you want to see a short version of the documentary go to:
If you want to read the article go to