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’re 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. The […]

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

Posted Leave a commentPosted 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, entitled: “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

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The winter 2020/21 edition of Rare Revolution Magazine is out today, featuring an article from On The Pulse, entitled: “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 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

Posted Leave a commentPosted 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 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

Posted Leave a commentPosted in Events

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 […]

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READ: Exclusive article for Pharmafile on haemophilia & Generation Z

Posted Leave a commentPosted in Media

Read the latest article by On The Pulse Director, Laurence Woollard, in an exclusive for Pharmafile entitled, “Haemophilia & Generation Zzzz: Waking up young people to new treatment possibilities!” Click here to access the freely available Autumn edition. Here’s an excerpt from the feature that centres on engaging and activating young people living with haemophilia […]