After a short mid-summer break from our Factor This! blog series, our latest edition for August has landed. We’re very pleased to have in this month’s hot seat, a definitive titan of the global bleeding disorders and biotechnology communities – Dr. Glenn Pierce. Glenn has not only been at the epicentre of haemophilia activism for […]
The Cambridge-based charity Findacure are hosting the latest instalment of their Rare Disease Showcase in the city centre this Thursday, and we’re really excited to be part of it! Cambridge is an illustrious hotspot for scientific research, with the likes of the iconic Cambridge Science Park and state-of-the-art Wellcome Genome Campus hosting some of […]
This month’s guest for our Factor This! blog series needs no introduction. Mark Skinner’s universal reputation as a stalwart advocate and progressive leader for people with bleeding disorders very much precedes him. Mark’s wealth of experience spanning over 30 years, makes his CV read like a How to book for specialising in international public policy […]
On behalf of On The Pulse, we are incredibly proud to be celebrating our first anniversary as a company! These past 12-months have gone by so quickly. Since setting out as a small independent start-up, it’s quite hard to believe the enormity and diversity of activities and engagements we’ve been involved with, both here in […]
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 […]
As global annual awareness days go, 17 April is undoubtedly the most significant for those affected by bleeding disorders – it’s World Haemophilia Day! This is the one occasion the community really gets to call its own. For 2018, the overarching theme is, Sharing Knowledge Makes Us Stronger. The World Federation of Hemophilia (WFH) want […]
More than two weeks ago, I received a Facebook message from Rahul Phulore. He’d just undergone gene therapy. This is a guy my age – 28 – also with severe haemophilia A. Except he was born into a part of the world near Mumbai, where amongst the hustle and bustle of this vibrant Indian city, […]
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 […]
