Navigating NICE and drug evaluations

The number of treatments (orphan drugs) being developed for rare diseases is on the rise. In the USA, FDA orphan designations have steadily increased year on year since 2000 (EvaluatePharma – Orphan Drug Report 2014). While this is great news, these orphan drugs come...

Raising Funds From The Crowd

It can be incredibly difficult to fundraise for rare diseases, especially from traditional sources of funding like trusts and foundations. Rare diseases often get overlooked for more common conditions, where the impact of funding is seen as more significant. This is...

Communications and PR for Small Patient Groups

[row][two-third] This past Friday saw our sixth training workshop take place, on the topic of communications and PR for small patient groups. We had 40 delegates, from 29 patient groups, come together in the beautiful Grade II listed room at the Royal College of...