Professor Michael Barry:

The rare diseases group meets those making a submission. For example, we met children with spinal muscular atrophy and their families in regard to Spinraza. They made a very detailed presentation involving videos of what it is like to live with spinal muscular atrophy. Particularly in regard to drugs for rare diseases, the new rare diseases committee considers that dimension which had not previously been looked at in such detail. That is a positive development.