On The Pulse participating in the WFH 2022 World Congress in Montréal

Posted Posted in Events, World Federation of Hemophilia

We are excited to be participating in-person at the World Federation of Hemophilia (WFH) 2022 World Congress, taking place between Sunday, May 8 and Wednesday, May 11 at the Palais de congrès in Montréal, Canada.  The WFH World Congress is the biggest event for the global inherited bleeding disorders community. This is the first international […]

Partnering with Prime Global to Recognise World Haemophilia Day 2022

Posted Posted in Awareness Days, Media

To mark World Haemophilia Day on April 17, we have partnered with the medical communications and market access company, Prime Global and sister agency, HCD Economics, on a feature article about taking meaningful action and creating real change to patients’ lives.  In the Prime Global article, titled “Haemophilia awareness: building trusted relationships between patients and […]

LISTEN: EMG Health Podcast on gene therapy for haemophilia

Posted Posted in Media

A bonus episode of the European Medical Group (EMG) Health Podcast features an interview with On The Pulse director, Laurence Woollard and paediatric haematologist, Dr Steven Pipe, on the latest advancements in gene therapy for haemophilia. Hosted by Dr Julie Ann Lough, the podcast sees Laurence and Dr Pipe, an eminent Professor of Paediatrics and […]

Rare Disease Day 2022 – ‘Patient & Public Involvement in Era of ATMPs’

Posted Posted in Awareness Days, Events, Media

In celebration of Rare Disease Day 2022, we have partnered with the Association of the British Pharmaceutical Industry (ABPI) to raise awareness of the importance of patient and public involvement (PPI) to achieve greater access to advanced therapy medicinal products (ATMPs) for rare diseases. ATMPs that aim to repair, replace, regenerate and re-engineer genes, cells […]

NEW PUBLICATION: Improving informed consent for gene therapy

Posted Posted in Journal publications

We are excited to share our latest review article on informed consent practices in the age of genetic medicines, published in the peer-reviewed, open access journal, Therapeutic Advances in Rare Disease (TAIRD).  On The Pulse director, Laurence Woollard, joined forces with Dr Rich Gorman and Dr Dakota Rosenfelt, to produce the comprehensive paper titled: “Improving […]

READ: Commentary in BMJ Opinion on exposing medical paternalism

Posted Posted in Awareness Days, Events, Media

In recognition of World Haemophilia Day 2021, we are pleased to have our first commentary published in BMJ Opinion, drawing attention to the practice of medical paternalism against the backdrop of the ongoing Infected Blood Inquiry.  BMJ Opinion provides a platform for debate on topical issues of relevance to its international medical and healthcare readership. […]

READ: Article on patient education through social media, out in PEN

Posted Posted in Media

The latest issue of the quarterly US-based publication, Parent Empowerment Newsletter (PEN), produced by LA Kelley Communications, Inc., is now available, featuring an article from On The Pulse, titled: “Patient Education Through Social Media in the COVID Era.“ PEN is one of the most popular and credible sources of up-to-date news and information for people […]

READ: Article on the ‘Covid Generation’ and health transition

Posted Posted in Media

The winter 2020/21 edition of Rare Revolution Magazine is out today, featuring an article from On The Pulse, titled: “Spotlight on the ‘Covid Generation’ and transitional healthcare for young people.” This is our third formal contribution to the digital magazine, with this latest issue (No. 018) opening up the conversation on ‘RARE Transition’. On The […]

READ: Journal article on patient education and gene therapy in haemophilia

Posted Posted in Journal publications

We are excited to share the news of our first-ever article being published in the international, peer-reviewed journal, Haemophilia, on the topic of patient education and gene therapy. The multi-authored, open-access editorial, in the framework of a letter to the Editor, is titled: “Addressing patient education priorities in the era of gene therapy for haemophilia: […]