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 […]

John Pasi Factor This! feature image

Factor This! Series: In Conversation with John Pasi

Posted Leave a commentPosted in Factor This!

The working year is nearly over but we’re thrilled to be rounding off our Factor This! blog series with yet another exceptional scientist and clinical thought-leader in haemophilia – Professor John Pasi. Since 2003, John has been Professor of Haemostasis and Thrombosis and Honorary Consultant Haematologist at Barts and The London School of Medicine and […]

WFH 2018 World Congress logo

On The Pulse at the WFH 2018 World Congress in Glasgow

Posted Leave a commentPosted in Events, World Federation of Hemophilia

The countdown to the biggest global gathering of the bleeding disorders community is firmly on!  From May 20-24, we will be amongst thousands of attendees descending on the Scottish Event Campus (SEC) in Glasgow, Scotland for the 33rd biennial World Federation of Hemophilia (WFH) 2018 World Congress. WFH 2018 is one of the most hotly […]

A Rare Life Together - Andy & Jackie

A Rare Life Together – Factor-ing in Haemophilia!

Posted 2 CommentsPosted in Awareness Days, Haemophilia Stories

It’s officially Rare Disease Day 2018 – the major event of the year where the global rare disease community come together in unity and solidarity, to champion for our rights and further the rare disease cause (see Rare Disease Day 2018 – Join in and #ShowYourRare) I could have so easily focussed here on what’s happening […]

Abdou and His Haemophilia: ‘I Was Waiting 24 Years For This Moment’

Posted Leave a commentPosted in Haemophilia Stories

According to the latest Nescafe advert, we’ll meet nearly 80,000 people in our lifetime. But how many will really make an impact on us? Abdou Diallo certainly has on me. At our first meeting at the World Federation of Hemophilia (WFH) Congress in Orlando in summer 2016, I could tell, just from our initial conversation, that […]

Talking Haemophilia Care: ‘Making Individual Needs Count!’

Posted Leave a commentPosted in European Haemophilia Consortium, Events, Personal Perspectives

How do you know what you don’t know? Who’s opening the channels of dialogue for you to begin to know what you should know? Crikey, what a conundrum! As someone living with haemophilia, I admit, even into my early twenties, I didn’t really know enough about how effective my treatment was for me, the alternatives […]