There are only two weeks to go until one of the largest rare bleeding disorders patient gatherings on the continent – the 2018 European Haemophilia Consortium (EHC) Conference! Along with the European Association of Haemophilia and Allied Disorders (EAHAD) Congress and the World Federation of Hemophilia (WFH) World Congress, the EHC Conference is one of the […]
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 […]
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 […]
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 […]
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 […]
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 […]