Partnering with Prime Global to Recognise World Haemophilia Day 2022

Posted Posted in Awareness Days, Media

To mark World Haemophilia Day on April 17, we have partnered with the medical communications and market access company, Prime Global and sister agency, HCD Economics, on a feature article about taking meaningful action and creating real change to patients’ lives.  In the Prime Global article, titled “Haemophilia awareness: building trusted relationships between patients 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 […]

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: […]

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

Posted Posted 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 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 […]

Cambridge Rare Disease Network RAREsummit 2019

VIDEO: Watch the highlights from CRDN RAREsummit 2019

Posted Posted 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 […]