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 […]
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 […]
Few rare disease communities can boast of having a champion cyclist to call their own. In haemophilia, Alex Dowsett has pedalled past the impossible and is still overtaking any doubts of what can be achieved living with a severe bleeding disorder. At just 29 years of age, Alex has been competing consistently at the pinnacle […]
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 […]
The concept of gene therapy isn’t as new as we might think, having been first mooted in the early ‘70s[i]. At the time, I’m sure my grandad (if he was ever aware of this), would’ve thought it so far out and the stuff of fantasy to ever be possible. After all, he was most probably […]
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, […]
