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. […]

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

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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: Journal article on patient education and gene therapy in haemophilia

Posted Leave a commentPosted 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: […]

On The Pulse taking part in Findacure’s Virtual Rare Disease Showcase 2020

Posted Leave a commentPosted in Events, Findacure

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, the Rare Disease Showcase series is a celebration of both innovative rare disease projects, and the actors committed to improving research and support for people affected and their families, across the UK. Taking […]

WFH Virtual Summit 2020

On The Pulse to participate in the WFH Virtual Summit 2020

Posted Leave a commentPosted 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

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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 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, […]

Cambridge Rare Disease Network RAREsummit 2019

VIDEO: Watch the highlights from CRDN RAREsummit 2019

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Highlights from the inaugural RAREsummit organised by Cambridge Rare Disease Network (CRDN) and hosted at the Wellcome Genome Campus, are now available to watch here.   About RAREsummit RAREsummit was a one day breakthrough event back in September 2019 with the motto ‘Patient as Partners.’ It brought together academics, scientists, medics, investors, entrepreneurs, government ministers […]