Professor Michael Barry:

There is another mechanism: a rare disease technology review committee. I actually chaired that for a few years. I found it really useful because we invited people to come in and present their stories. We did it for spinal muscular atrophy very effectively, and that really informed the process. The information was fed back to the drugs group. This is happening not only at NCPE level but also through the rare diseases technology review group. Both, but particularly the rare diseases technology review group, give the patient a voice. That is very important.