It’s that special time of the year again… April 17 is officially World Haemophilia Day! People across the global haemophilia community will unite to increase awareness and understanding of those living with the condition and other bleeding disorders. To mark the occasion, we’re especially pleased to feature exclusively in PharmaTimes online. Hear from On The […]
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 […]
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, […]
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 […]
We’re excited to announce the launch of our new blog series for 2018 called, Factor This! Over the coming months, we’ll be bringing you the essential insights and perspectives of some of the biggest names, influencers and key players across the global haemophilia community. Featuring some of the game changers in research and academia, clinical […]
I’m a tad late to the Christmas party with all the feel-good festive updates and extra trimmings of what’s to come for On The Pulse in 2018. But to avoid any meaty excesses or glossing over trifles, the last few months since our inception has proved to be a hugely insightful and productive phase in […]
Cor blimey, it all went bleedin’ mad! Excuse the pun but the snowball effect of media hype around haemophilia and gene therapy positively hit me full in the face! If you happen to follow Professor Michael Makris on Twitter (he truly is someone in the know!), no doubt you would have read his many insights […]
DNAdigest is a non-profit organisation based in Cambridge that works to promote and enable easier and more efficient sharing of genomic data to support and progress scientific research into all genetic diseases. With possibly some big genetic discoveries still unidentified or hidden, they are finding alternative pathways for the exchange of information between key stakeholders, […]
It has been a busy few weeks at On The Pulse HQ, not least because I applied for the one vacant Trustee place at The Haemophilia Society. Those of you who know me will appreciate the significance of the charity’s early endorsement and influence on my involvement in the bleeding disorder and wider rare disease […]
