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: Shared-decision making
Partnering with Prime Global to Recognise World Haemophilia Day 2022
To mark World Haemophilia Day on April 17, we have partnered with the medical communications and market access company, Prime Global and […]
Talking informed consent for gene therapy on BloodStream™ podcast
The latest episode of BloodStream™, a bleeding disorders community podcast, is now freely available to listen to, featuring a guest appearance from […]
NEW PUBLICATION: Improving informed consent for gene therapy
We are excited to share our latest review article on informed consent practices in the age of genetic medicines, published in the […]
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 […]
READ: Journal article on patient education and gene therapy in haemophilia
We are excited to share the news of our first-ever article being published in the international, peer-reviewed journal, Haemophilia, on the topic […]
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 […]
Factor This! Series: In Conversation with Mark Skinner
This month’s guest for our Factor This! blog series needs no introduction. Mark Skinner’s universal reputation as a stalwart advocate and progressive […]