The September 2024 National Haemophilia is now available to read online and in print. In this issue we feature:
- Heavy menstrual bleeding
- Bleeding Disorders Awareness Month
- Parenting a teenager with a rare bleeding disorder
- Gene therapy snapshot survey results
- Youth/Factored In: Travelling to USA & Canada
Thank you so much to the community members and health professionals who contribute to National Haemophilia. Your insights and expertise are invaluable.
Bleeding Disorders Awareness Month
Bleeding Disorders Awareness Month is coming up in October. Each year the community gets together to help raise awareness for haemophilia, VWD and other rare bleeding disorders through school events, info stalls, cupcake stands, dress-up days, and more. Find out how you can get involved.
Teens with bleeding disorders
This issue of National Haemophilia has two great articles covering teenagers with bleeding disorders. Jaime Chase discusses heavy menstrual bleeding and when to seek help, while Elizabeth shares her experiences of parenting her teenage daughter Grace, who has Glanzmann Thrombasthenia.
Gene and emerging therapies
What does our haemophilia community want from new therapies like gene therapy? 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. Read the results.
Ashley Fletcher reports on ISTH 2024 Congress: novel therapies, highlighting exciting new haemophilia treatments using a range of innovative technologies.
Travelling to USA & Canada
Jack’s latest travel adventures have taken him to Canada and USA, snowboarding and managing haemophilia on the road with new treatments. In the Rockies it got down to -40 degrees! Read about his trip.
Other news
In this issue of National Haemophilia we also look at hep C and managing your liver health, Jane Portnoy talks about career and job pathways, and we have some user tips for recording new treatments on MyABDR.
We hope you enjoy reading National Haemophilia!
