Survey launched for UK-based rare disease patient advocacy groups on gene therapy decision aids
A new survey has been launched to better understand how rare disease patient advocacy groups (PAGs) in the UK account for their […]
Tag: NHS
Rare Disease Day 2022 – ‘Patient & Public Involvement in Era of ATMPs’
In celebration of Rare Disease Day 2022, we have partnered with the Association of the British Pharmaceutical Industry (ABPI) to raise awareness […]
READ: Commentary in BMJ Opinion on exposing medical paternalism
In recognition of World Haemophilia Day 2021, we are pleased to have our first commentary published in BMJ Opinion, drawing attention to […]
World Haemophilia Day 2020 – Special Feature For Rare Revolution Magazine
To mark World Haemophilia Day on April 17, we are pleased to have a special feature published online at Rare Revolution magazine […]
VIDEO: Watch Episode 1 of The Culture Shift with Dr Ann Hagell
The first episode of our brand-new video series, The Culture Shift has finally landed! Watch in full below with our special guest, Dr […]
Spotlight on History: Contaminated Blood and the Origins of the Infected Blood Inquiry
The Infected Blood Inquiry, chaired by Sir Brian Langstaff, is due to begin its public hearings in London on Tuesday 30 April […]