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 […]

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 […]

Talking Haemophilia Care: ‘Making Individual Needs Count!’

Posted Posted 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 […]