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: 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: […]

WFH Virtual Summit 2020

On The Pulse to participate in the WFH Virtual Summit 2020

Posted Posted in Events, World Federation of Hemophilia

The World Federation of Hemophilia (WFH), in an effort to bring the international bleeding disorders community together at this time with COVID-19, is hosting a six-day virtual summit that is free for attendees to take part in. This year’s edition of the biennial WFH meeting – originally scheduled to take place in Kuala Lumpur, Malaysia – […]

World Haemophilia Day 2020 – Special Feature For Rare Revolution Magazine

Posted Posted in Awareness Days, Events, Media

To mark World Haemophilia Day on April 17, we are pleased to have a special feature published online at Rare Revolution magazine entitled, ‘Making Sense of the Headlines: Empowered and Informed Treatment Choice in Haemophilia’. On The Pulse Director, Laurence Woollard, was delighted to co-author the feature with Dr Rich Gorman, an interdisciplinary social scientist […]

Rare Revolution Rare Blood Edition blog hero image

READ: Interview with us by Open Health in Rare Revolution Magazine

Posted Posted in Media

We’re delighted to feature in the latest edition of Rare Revolution Magazine entitled ‘RARE Blood’, which is shining a spotlight on all things rare bleeding disorders.  The five-page in-depth supplement includes On The Pulse director, Laurence Woollard, discussing the work we undertake in the haemophilia and wider rare disease community. The interview also offers insight […]