Sporting inspiration – exercising with a bleeding disorder
Our Project GYM resources provide hints and tips on exercise for people with bleeding disorders and personal trainers From the UEFA football championship, tennis at Wimbledon, and countless races, meets and tournaments, to the Olympics and the Paralympics, summer 2024 continues to be a busy time for sports. It’s exciting, entertaining and inspiring. …
On von Willebrand disease, community, and being the voice of the voiceless
Sunny Maini talks about using his experience of von Willebrand disease and a successful corporate background to nurture an empowered patient community I was diagnosed with Type 3 von Willebrand disease (vWD) as a baby – I bled in the cot. As a child, I was treated at Great Ormond Street Hospital, with Kate …
Reflections on the Infected Blood Inquiry report: the beginning of justice
Three weeks on from the publication of Sir Brian Langstaff’s report on the Infected Blood Inquiry, Sally-Anne Wherry reflects on her experience of that day and the questions that remain for the infected and affected Last month saw the publication of the Infected Blood Inquiry report. As the daughter of one of those involved, …
Accessing haemophilia care in Uganda
The theme for World Hemophilia Day 2024 is ‘Equitable Access for All: Recognizing All Bleeding Disorders’. If you have haemophilia and live in a developed country, access to care tends to be good. In some parts of the world, though, there are various reasons why people with haemophilia find it difficult to access the care …
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 …