Dan Jeffries – A Rarity Personified
Imagine living with one of the world’s rarest medical conditions, to then discover you have another one… with the unexpected melodramas that are […]
Tag: Patient advocacy
Rare Disease Day 2018 – Join in and #ShowYourRare!
In four weeks time, the global rare disease community will join together and stand as one to highlight and bring public attention […]
On The Pulse at EAHAD 2018 in Madrid
‘Hala Madrid!’ We’re excited to be heading to the home of the Los Blancos and the Spanish capital for the first major […]
Introducing ‘Factor This!’ – A New Feature Blog Series
We’re excited to announce the launch of our new blog series for 2018 called, Factor This! Over the coming months, we’ll be […]
On The Pulse – A Morsel of Reflections and An Enduring Appetite For 2018
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 […]
DNAdigest Interview – Haemophilia Insights and More
DNAdigest is a non-profit organisation based in Cambridge that works to promote and enable easier and more efficient sharing of genomic data […]
The Haemophilia Society Trustee Election 2017 – Reaction
It has been a busy few weeks at On The Pulse HQ, not least because I applied for the one vacant Trustee […]
VIDEO: ‘Hello Haemophilia’ a New Community Hub
I was recently invited to share a snapshot about haemophilia in my family for Hello Haemophilia, a new online network that aims […]
Abdou and His Haemophilia: ‘I Was Waiting 24 Years For This Moment’
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 […]
Speech Summary: ‘Patient Perspectives Of Haemophilia Care’
The furthest east in Europe I’ve ever been, Vilnius in Lithuania was the host capital to the annual European Haemophilia Consortium Conference, […]