Talking informed consent for gene therapy on BloodStream™ podcast

Posted Leave a commentPosted in Media

The latest episode of BloodStream™, a bleeding disorders community podcast, is now freely available to listen to, featuring a guest appearance from On The Pulse director, Laurence Woollard, talking all things informed consent for gene therapy in haemophilia. Laurence is accompanied by Dr Rich Gorman and Dr Dakota Rosenfelt as they unpack for listeners their recently […]

NEW PUBLICATION: Improving informed consent for gene therapy

Posted Leave a commentPosted 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 Leave a commentPosted 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. […]

Rare Disease Day 2020 - Q&A by EUCOPE

Rare Disease Day 2020 – Q&A by EUCOPE

Posted Leave a commentPosted in Awareness Days, Events

In recognition of Rare Disease Day 2020, On The Pulse director, Laurence Woollard, was put in the hot seat for an interview by the European Confederation of Pharmaceutical Entrepreneurs (EUCOPE). EUCOPE cover a range of trending topics with Laurence in the rare disease field, including patient education and engagement, health literacy, drug discovery and repurposing, […]

VIDEO: Watch Episode 1 of The Culture Shift with Dr Ann Hagell

Posted Leave a commentPosted in The Culture Shift

The first episode of our brand-new video series, The Culture Shift has finally landed! Watch in full below with our special guest, Dr Ann Hagell, Research Lead at the Association for Young People’s Health. Hear from Ann about why young people’s views are vital to inform health service provision, the influence of peer support, new models […]

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Spotlight on History: Contaminated Blood and the Origins of the Infected Blood Inquiry

Posted Leave a commentPosted in Events, Infected Blood Inquiry

The Infected Blood Inquiry, chaired by Sir Brian Langstaff, is due to begin its public hearings in London on Tuesday 30 April 2019. The inquiry is examining the circumstances in which men, women and children were given contaminated blood and contaminated blood products in the UK, in particular since 1970. As of next week, people […]

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Factor This! Series: In Conversation with John Pasi

Posted Leave a commentPosted in Factor This!

The working year is nearly over but we’re thrilled to be rounding off our Factor This! blog series with yet another exceptional scientist and clinical thought-leader in haemophilia – Professor John Pasi. Since 2003, John has been Professor of Haemostasis and Thrombosis and Honorary Consultant Haematologist at Barts and The London School of Medicine and […]

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On The Pulse at the 2018 EHC Conference in Brussels

Posted Leave a commentPosted in European Haemophilia Consortium, Events

There are only two weeks to go until one of the largest rare bleeding disorders patient gatherings on the continent – the 2018 European Haemophilia Consortium (EHC) Conference! Along with the European Association of Haemophilia and Allied Disorders (EAHAD) Congress and the World Federation of Hemophilia (WFH) World Congress, the EHC Conference is one of the […]