From haemophilia hero to ecology zero: Luke’s new chapter
Back in the 2011, I received an invitation to participate in a focus group for young people with haemophilia. The venue? The Emirates Stadium in North London—a dream for any lifelong Arsenal fan like myself (a trait that has arguably impacted my health as much as my haemophilia). It was during this gathering that I …
In addressing equity, we need to acknowledge the rares within the rare
For Rare Disease Day 2024 the theme is “equity.” This is certainly a topic that resonates within the bleeding disorders community, where more and consistent attention needs to be paid to the “rares within the rare”. For Rare Disease Day 2024 the theme is “equity.” This is certainly a topic that resonates within …
Listen and learn like a legend
Vincent van Gogh cut one off in a rage, but Dr Kate Khair’s grandfather’s knew that Voltaire was on to something when he said “the ear is the avenue to the heart” Attending the annual EAHAD congress is always a highlight of the Haemnet year. But this year’s meeting in Frankfurt was doubly memorable. In …
Celebrating haemophilia specialist nurses
Last year, The Journal of Haemophilia Practice created a space within its pages to reflect on the important role that haemophilia nurses play within bleeding disorder care. In the ‘Living, Caring, Learning’ series, nurses from around the world to share their experiences of caring for people with bleeding disorders and their families, and to think …
Pathway to Cures: Seeking a world without inheritable blood and bleeding disorders
Imagine a world where inheritable bleeding disorders don’t exist. It’s an ambitious vision but one that Pathway to Cures (P2C), a venture philanthropy fund affiliated to the National Bleeding Disorders Foundation (NBDF), has in its sights. A catalyst for vital research Inheritable blood and bleeding disorders (IBBDs) – including haemophilia A and B, von …