No 227 September 2024

National Haemophilia September 2024 cover

Bleeding Disorders Awareness Month is coming up in October and with the theme of ‘new possibilities’ we explore what this means for the bleeding disorders community. What does our haemophilia community want from new therapies like gene therapy? Jack tells his story of travelling to the USA and Canada with new treatments. We have user tips for recording new treatments on MyABDR. We also look at hep C and liver health, career and job pathways, managing heavy menstrual bleeding in teenage girls and parenting a teen with a rare bleeding disorder.

In this issue

HFA's short video for teenage males answers the question, will males with haemophilia pass it on to their children - and how are genes involved?
Heading to the end of the year, we review our progress. Gene and emerging therapies are on the agenda, and Bleeding Disorders Awareness Month is coming up.
Bleeding Disorders Awareness Month is coming up in October 2024. How can you take part? Order your promotional items now!
Exciting new haemophilia treatments using a range of innovative technologies were highlighted at ISTH 2024 Congress.
With new haemophilia treatments, recording on MyABDR has some challenges. HTCs and users share their tips.
HFA's haemophilia gene therapy snapshot survey asked people and parents of children with haemophilia what outcomes they would like from treatment now and in the future.
Elizabeth shares her experiences of parenting her teenage daughter Grace who has Glanzmann thrombasthenia, a rare hereditary platelet function disorder.
World Hepatitis Day 2024 reminds us It’s time for action - hepatitis C and liver health remain important issues for our community and acting now is vital.
When and how to seek help for adolescent girls with bleeding disorders when they have heavy periods.
How can young people with bleeding disorders find the direction for their career and take the first steps in employment?
Jack talks about his travel adventures in Canada and the USA, snowboarding and managing haemophilia on the road with new treatments.
What's coming up in bleeding disorders?

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