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 our commitment to supporting and advocating for the haemophilia community.
Every start-up, no matter its purpose, seems to be influenced and inspired by a personal story or significance and On The Pulse is no different. Without being too sentimental or sounding corny during this ‘heart-warming’ holiday season, as Founder and Director, I guess I never envisaged that living with my bleeding disorder would encourage me to set about taking positive steps and action for those affected through a consultancy of my own.
From advising on and conceptualising educational resources and information, to encouraging companies to consider how they best interact and deliver for people with haemophilia and their caregivers, we feel our involvement with various partners across an array of initiatives and engagements is going some way towards maximising potential community benefit.
On a personal note, it was a really proud moment to present to my peers and European representatives at the annual European Haemophilia Consortium Conference in Vilnius, Lithuania during October. This offered a platform to really drive home the fundamental need for a cohesive relationship between the individual and their specialist healthcare team, which in turn can help shape the personalised care package expected for an improved quality of life.
We recognise there are many possibilities where we can help support and inform individuals living with haemophilia at grassroots level, to benefit the most from their treatment and care and we are exploring exciting ways to do this into the New Year.
If this year’s news stories and developments in haemophilia are anything to go by, 2018 looks likely to be just as impactful; pivoted around the global community coming together at the World Federation of Hemophilia Congress in Glasgow, Scotland, kicking-off 20th May. Until then, there’s going to be lots for us to focus on, with my first date on the events calendar being the New Frontiers in Coagulation Medicine Conference (SACC) on 10th January, where I’ll be facilitating a panel revolving around patient participation in clinical trials.
Laurence (and everyone at On The Pulse)