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 […]
More than two weeks ago, I received a Facebook message from Rahul Phulore. He’d just undergone gene therapy. This is a guy my age – 28 – also with severe haemophilia A. Except he was born into a part of the world near Mumbai, where amongst the hustle and bustle of this vibrant Indian city, […]
Chris Bombardier’s extraordinary endeavours have become the stuff of haemophilia folklore. His quest was to scale the Seven Summits, and in doing so, he literally reached the top of the world – the “Goddess Mother of Mountains” we know as Mount Everest! The curveball that makes it all the more jaw-droppingly incredible is that he has severe haemophilia! In […]
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 […]
In May 2017, Chris Bombardier defied multiple odds by becoming the first person living with haemophilia to summit the highest mountain on Earth – Mount Everest! At the turn of the year, Chris followed up this incredible feat by scaling Mount Vinson in Antarctica, which was the last climb in his extraordinary dream of completing the Seven Summits. […]
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 […]
