NEW PUBLICATION: Exploring news media hype around gene therapy
A new editorial, published in the peer-reviewed open access journal Therapeutic Advances in Rare Disease (TAIRD), examines the potential effects of sensationalised […]
Tag: Patient advocacy
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 […]
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 […]
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 taking part in Findacure’s Virtual Rare Disease Showcase 2020
On The Pulse are delighted to promote and support Findacure‘s Rare Disease Showcase, taking place virtually between 17-19 November 2020. Now in its fifth year, […]
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 […]
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 […]
Rare Disease Day 2020 – Q&A by EUCOPE
In recognition of Rare Disease Day 2020, On The Pulse director, Laurence Woollard, was put in the hot seat for an interview […]