World Haemophilia Day 2018 – Unlocking the Community’s Potential
As global annual awareness days go, 17 April is undoubtedly the most significant for those affected by bleeding disorders – it’s World […]
Tag: Rare disease
Rahul and His Haemophilia: ‘It Was Like the First Day of My New Life!’
More than two weeks ago, I received a Facebook message from Rahul Phulore. He’d just undergone gene therapy. This is a guy […]
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 […]
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 […]
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 […]
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, […]
Talking Haemophilia Care: ‘Making Individual Needs Count!’
How do you know what you don’t know? Who’s opening the channels of dialogue for you to begin to know what you […]