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 […]
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 […]
For almost three decades, Laureen Kelley has dedicated herself to educating and improving the lives of individuals and families impacted by haemophilia, both at home in America and throughout the developing world. Over this time, Laurie has cemented her status as one of the most respected and beloved thought leaders in global haemophilia advocacy. Her […]
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 […]
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 […]
Imagine living with one of the world’s rarest medical conditions, to then discover you have another one… with the unexpected melodramas that are worthy to be in a book. As it happens, Dan Jeffries is one such phenomenon. And yes, he’s even published his own memoirs! I first came across Dan after he gave a really passionate […]
In four weeks time, the global rare disease community will join together and stand as one to highlight and bring public attention to the challenges, hopes and needs of those affected in support of Rare Disease Day 2018. The annual awareness event, which was founded and arranged by the European Organization for Rare Diseases (EURORDIS), is now […]
I was recently invited to share a snapshot about haemophilia in my family for Hello Haemophilia, a new online network that aims to create positive change in the community. Please head over to our Facebook page @PulseInSync where the team have shared the link to learn a little about why I have my rare bleeding […]
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 […]
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 […]