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: Gene therapy
ANNOUNCEMENT: Laurence joins NHS England’s specialised blood disorders Clinical Reference Group (CRG)
We are pleased to announce that Laurence Woollard is joining NHS England’s specialised blood disorders Clinical Reference Group (CRG) in a personal […]
On The Pulse news round-up for H2 2022
It’s been a busy second half of 2022 at On The Pulse HQ. To close out the year, here’s a round-up of […]
LISTEN: EMG Health Podcast on gene therapy for haemophilia
A bonus episode of the European Medical Group (EMG) Health Podcast features an interview with On The Pulse director, Laurence Woollard and […]
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 […]
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 […]
On The Pulse to participate in the WFH Virtual Summit 2020
The World Federation of Hemophilia (WFH), in an effort to bring the international bleeding disorders community together at this time with COVID-19, is […]