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Tag: Patient advocacy

April 21, 2022April 21, 2022Awareness Days, Media

Partnering with Prime Global to Recognise World Haemophilia Day 2022

To mark World Haemophilia Day on April 17, we have partnered with the medical communications and market access company, Prime Global and […]

February 28, 2022February 28, 2022Awareness Days, Events, Media

Rare Disease Day 2022 – ‘Patient & Public Involvement in Era of ATMPs’

In celebration of Rare Disease Day 2022, we have partnered with the Association of the British Pharmaceutical Industry (ABPI) to raise awareness […]

November 19, 2021Media

Talking informed consent for gene therapy on BloodStream™ podcast

The latest episode of BloodStream™, a bleeding disorders community podcast, is now freely available to listen to, featuring a guest appearance from […]

April 16, 2021November 19, 2021Awareness Days, Events, Media

READ: Commentary in BMJ Opinion on exposing medical paternalism

In recognition of World Haemophilia Day 2021, we are pleased to have our first commentary published in BMJ Opinion, drawing attention to […]

November 29, 2020March 8, 2021Journal publications

READ: Journal article on patient education and gene therapy in haemophilia

We are excited to share the news of our first-ever article being published in the international, peer-reviewed journal, Haemophilia, on the topic […]

November 15, 2020March 8, 2021Events, Findacure

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

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, […]

WFH Virtual Summit 2020
June 10, 2020March 8, 2021Events, World Federation of Hemophilia

On The Pulse to participate in the WFH Virtual Summit 2020

The World Federation of Hemophilia (WFH), in an effort to bring the international bleeding disorders community together at this time with COVID-19, is […]

April 17, 2020March 8, 2021Awareness Days, Events, Media

World Haemophilia Day 2020 – Special Feature For Rare Revolution Magazine

To mark World Haemophilia Day on April 17, we are pleased to have a special feature published online at Rare Revolution magazine […]

Rare Disease Day 2020 - Q&A by EUCOPE
February 29, 2020March 8, 2021Awareness Days, Events

Rare Disease Day 2020 – Q&A by EUCOPE

In recognition of Rare Disease Day 2020, On The Pulse director, Laurence Woollard, was put in the hot seat for an interview […]

Cambridge Rare Disease Network RAREsummit 2019
February 20, 2020March 8, 2021Events

VIDEO: Watch the highlights from CRDN RAREsummit 2019

Highlights from the inaugural RAREsummit organised by Cambridge Rare Disease Network (CRDN) and hosted at the Wellcome Genome Campus, are now available […]

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