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 […]
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 […]
‘Hala Madrid!’ We’re excited to be heading to the home of the Los Blancos and the Spanish capital for the first major event in the haemophilia calendar of 2018 – the European Association for Haemophilia and Allied Disorders (EAHAD) Congress, taking place between 7-9 February at the Palacio Municipal. Now into its 11th year, the EAHAD […]
