DNAdigest Interview – Haemophilia Insights and More

Posted Leave a commentPosted in Media, Personal Perspectives

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, […]

The Haemophilia Society Trustee Election 2017 – Reaction

Posted 2 CommentsPosted in Haemophilia News, Personal Perspectives, The Haemophilia Society

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 […]

Abdou and His Haemophilia: ‘I Was Waiting 24 Years For This Moment’

Posted Leave a commentPosted in Haemophilia Stories

According to the latest Nescafe advert, we’ll meet nearly 80,000 people in our lifetime. But how many will really make an impact on us? Abdou Diallo certainly has on me. At our first meeting at the World Federation of Hemophilia (WFH) Congress in Orlando in summer 2016, I could tell, just from our initial conversation, that […]

Speech Summary: ‘Patient Perspectives Of Haemophilia Care’

Posted Leave a commentPosted in European Haemophilia Consortium, Events, Personal Perspectives, Speaking

The furthest east in Europe I’ve ever been, Vilnius in Lithuania was the host capital to the annual European Haemophilia Consortium Conference, which celebrated its 30th anniversary year. It was also a milestone event for me personally, having been asked to speak for the first time as part of an industry-sponsored symposium. The symposium title was, Patients […]

Talking Haemophilia Care: ‘Making Individual Needs Count!’

Posted Leave a commentPosted in European Haemophilia Consortium, Events, Personal Perspectives

How do you know what you don’t know? Who’s opening the channels of dialogue for you to begin to know what you should know? Crikey, what a conundrum! As someone living with haemophilia, I admit, even into my early twenties, I didn’t really know enough about how effective my treatment was for me, the alternatives […]

Bloodstream Podcast: ‘The Endeavour To Progress’

Posted Leave a commentPosted in Media, Personal Perspectives

Bloodstream is a free monthly podcast for and about the bleeding disorders community, featuring regular news, interviews and informed debates. It is brought to listeners by the National Hemophilia Foundation in the US and is hosted by Patrick James Lynch, Co-founder and CEO of Believe Limited; the digital content agency that produces the podcast. Patrick […]