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: 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: […]

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 […]

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 […]

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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World Haemophilia Day 2019 – Online Exclusive for PharmaTimes

Posted Leave a commentPosted in Awareness Days, Events

It’s that special time of the year again… April 17 is officially World Haemophilia Day! People across the global haemophilia community will unite to increase awareness and understanding of those living with the condition and other bleeding disorders. To mark the occasion, we’re especially pleased to feature exclusively in PharmaTimes online. Hear from On The […]

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

Posted Leave a commentPosted 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 […]

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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 […]

Findacure Cambridge Rare Disease Showcase 2018

Findacure – The Cambridge Rare Disease Showcase 2018

Posted Leave a commentPosted in Events, Findacure

The Cambridge-based charity Findacure are hosting the latest instalment of their Rare Disease Showcase in the city centre this Thursday, and we’re really excited to be part of it!   Cambridge is an illustrious hotspot for scientific research, with the likes of the iconic Cambridge Science Park and state-of-the-art Wellcome Genome Campus hosting some of […]