New women’s education resource

We are pleased to announce the publication of our new education resource, Haemophilia testing in women and girls: your questions answered.

Explaining genetic testing and factor level testing

This is a comprehensive booklet about genetic testing and factor level testing in haemophilia for women, girls and parents of girls.

There are often many questions and things to think about when checking to see if a woman or girl is affected by haemophilia.

  • What is involved in genetic and factor level tests?
  • Who should have them, and at what stage in their life?
  • How is haemophilia passed on in a family – and what if there is no family history?
  • And why do some women and girls have bleeding symptoms or haemophilia and others do not?

This resource was developed to answer these and other questions. It has infographics, tables and personal stories to help with the explanations.


We are grateful to the women and parents in our community who contributed to the development of this resource with their questions and their experiences. Special thanks to Jane, Sharri and Michelle for sharing their personal stories.
We asked expert reviewers to answer their questions and would like to acknowledge the work of the specialist health professionals from our Haemophilia Treatment Centres and other genetics and legal experts in developing the resource with the very latest information and approaches.
We invite you to take a look at the resource and pass it onto anyone you think would find it helpful.
If you would like a print copy, email us or call 0398857800 to post you a copy.
And look out for our short and simple version which is coming soon!


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