Rare Diseases blogs

Working together, we are all determined to create more medicines for pregnant women
Steve Hoare, the ABPI's Head of Safety and Quality, talks about how industry is trying to address the lack of medicines approved for pregnant women.

Worth the wait – The Goldacre review
Our thoughts on Professor Ben Goldacre’s “Better, broader, safer” report into health data.

Innovative medicines can bring hope to people with rare diseases – let’s get them to patients
England’s Action Plan for Rare Diseases contains important commitments to ensure that people with rare diseases get faster diagnosis, better care and timelier access to the treatments they desperately need.

Shanali – I am not the illness, I am a person first
Shanali Perera lives with vasculitis, a rare autoimmune condition. She is an artist, educator and writer, having retired from her first career as a rheumatologist.
Rare diseases have a devastating impact on people’s lives: pharmaceutical companies here in the UK and around the world are working to change that – developing new medicines to give families hope for the future.
The UK Rare Diseases Framework has been published, a national vision of how the UK will improve the lives of those living with rare diseases. Industry wants to help fulfil its important priorities. Read the ABPI statement.