More info

For more information

Haemophilia testing in women and girls: a guide (shorter/simpler version)
Download the PDF

Haemophilia testing in women and girls: your questions answered (comprehensive version)
Download the PDF

Sources

References

1.van Galen KPM, d'Oiron R, James P, et al. A new hemophilia carrier nomenclature to define hemophilia in women and girls: Communication from the SSC of the ISTH. Journal of Thrombosis and Haemostasis. 2021;19(8):1883-1887. Accessed 24 March 2022. 

2. Australian Bleeding Disorders Registry data provided to HFA by the National Blood Authority, following an HFA request approved by the ABDR Steering Committee, 2020

3. Kasper CK, Lin JC. How many carriers are there? Haemophilia 2010;16:842. Accessed 24 March 2022. 

4. Hermans C, Kulkarni R. Women with bleeding disorders. Haemophilia. 2018;24(Suppl. 6):29-36. Accessed 25 March 2022. 

5. Srivastava A, Santagostino E, Dougall A, et al. WFH guidelines for the management of hemophilia, 3rd edition. Haemophilia. 2020: 26(Suppl 6): 1-158. Accessed 24 March 2022. 
 

Other sources 

Alabek M, Mohan R, Raia MA. Genetic counselling for hemophilia. Rev. edn. Treatment of hemophilia No 25. Montreal: World Federation of Hemophilia, 2015. Accessed 24 March 2022. 

Australian Haemophilia Centre Directors’ Organisation. Guidelines for the management of haemophilia in Australia. Melbourne; Canberra: AHCDO; National Blood Authority, 2016. Accessed 24 March 2022. 

World Federation of Hemophilia. Carriers and women with hemophilia. Montreal: WFH, 2012. Accessed 24 March 2022. 

Acknowledgements

Written by Suzanne O’Callaghan, HFA Policy Research and Education Manager.

Quotes in this resource were contributed by Australian women affected by haemophilia. We thank them for their generosity in sharing their experiences. The short case studies are drawn from the experience of several women and girls but they are not real names or people.

Our thanks also to the HFA Women’s Consumer and Health Professional Review Groups for their suggestions on topics and content to include.
 

Reviewers

Australia and New Zealand Haemophilia Psychosocial Group: Kathryn Body, Jane Portnoy.

Australian Haemophilia Centre Directors’ Organisation: Dr Simon Brown, Dr Julie Curtin, Dr Jane Mason, Dr Stephanie P’ng.

Australian Haemophilia Nurses’ Group: Jaime Chase, Janine Furmedge, Penny McCarthy, Joanna McCosker, Megan Walsh.

Genetics and genetic counselling: Clinical A/Prof Kristi Jones, Senior Staff Specialist in Clinical Genetics, The Children's Hospital at Westmead, Sydney.

Haemophilia Foundation Australia: Sharon Caris, Suzanne O'Callaghan.

HFA Women’s Consumer Review Group: individuals not named for privacy reasons.

Maurice Blackburn Lawyers: Laura Davies, Associate, Superannuation, Insurance; Azita Adrian, Lawyer, Employment Issues.