From 2015 -2018 The Haemophilia Society came together with a wide range of charities, clinical experts and patient representatives supported by the James Lind Alliance and The UK Haemophilia Doctors Organisation who are affected by both inherited or acute bleeding, whether due to the bleeding disorders our community experience, to people who have excessive bleeding from trauma, childbirth or other bleeding disorders such as ITP.
Together, we worked to identify the top 10 questions that need to be answered by research in the coming years, consulting widely to gain as broad a view as possible.
It was a fabulous experience of collaboration where learning and understanding of the variety of situations faced developed over the course of our project.
The final report is now published and we hope some of these questions will be answered in the future.
The latest newsletter from the James Lind Alliance (JLA) can be found here.