No 192 December 2015

HFA Women and Girls' Project Update

WOMEN’S PROJECT

Understanding bleeding disorders in females is a relatively new field and this has been very challenging in the development of the HFA resources for women and girls!

The women and girls in our review groups have put together questions to be answered, which involves developing some sections from scratch using expert advice. Rather than releasing the sections as two finished booklets, which was our original plan, we are now going to release the sections as standalone fact sheets. Together they will still make up the booklets but can be read on their own – and we can release them as we get each one finished.

HFA has been fortunate to be able to contract Sandy Breit to assist with our work on the women’s project and developing the women and girls’ resources. Some of you may recall Sandy from her time at HFV, where she worked as a Haemophilia and Hep C Counsellor from 1991 - 2008. She organised a number of information sessions on VWD and women who carry the haemophilia gene, and was also involved in establishing a women's group. Sandy has also worked as a Counsellor and Support Worker at Cystic Fibrosis VIC, SIDS and Kids, VicDeaf and has more recently worked with families whose babies have been diagnosed with a hearing loss through the Victorian Infant Hearing Screening Program.

HOW TO BE INVOLVED?

Thanks to the women who have agreed to be part of the project and share their experiences or contribute to the new HFA education resources!

If you are a woman who carries the gene or have bleeding symptoms, and would like to be involved in the project, it’s not too late - contact Suzanne O'Callaghan at HFA:

E: socallaghan@haemophilia.org.au
T: 1800 807 173

You can:

  • Tell your story for National Haemophilia and/or the new resources

And/or

  • Contribute by giving your ideas or comments on the draft resources.

INFORMATION FOR YOUNG WOMEN AND TEENAGE GIRLS

HFA is also working on information resources specifically targeted at young women and teenage girls in the 13-25 age group. These are being developed in addition to the new booklets for women.

For more information about this project, contact Hannah Opeskin at HFA:

E: hopeskin@haemophilia.org.au
T: 1800 807 173

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