No 187 September 2014

HFA Women and Girls Project

HFA is continuing with its work to develop information resources for women and teenage girls with bleeding disorders.

WOMEN'S RESOURCES

These will in a magazine style and will include the personal stories of women who have a bleeding disorder, including those who carry the haemophilia gene or have von Willebrand disorder (VWD).

Susies story about living with VWD in this issue of National Haemophilia highlights how important it is for women to connect with each other by sharing their stories and realising that they are not alone in their experiences – and that having a bleeding disorder is something that can be talked about.

You may have noticed that the new HFA booklets on haemophilia, mild haemophilia and von Willebrand disorder include special sections for women and carrying the gene. These have been written with the input of Australian women with bleeding disorders in the HFA women’s resources review group. They cover the messages that the women think should be communicated and brief information on relevant topics.

There will be two new resources for women:

  • Carrying the gene for haemophilia
  • Living with a bleeding disorder.

HOW TO BE INVOLVED?

If you are a woman who carries the gene or have bleeding symptoms and are interested in being involved, you can:

  • Participate in the HFA women’s resources review group. This involves contributing ideas on what should go in the resources and reading over drafts of the resources and giving your comments
  • Tell your story and have it included in the new resource (and National Haemophilia) – it can be anonymous if you prefer – and you can write your story yourself or be interviewed over the phone.

If you would like to be involved please contact Suzanne O’Callaghan, HFA Policy Research and Education Manager:

email socallaghan@haemophilia.org.au, or
phone 1800 807 173 (Mon to Fri)

INFORMATION FOR YOUNG WOMEN AND TEENAGE GIRLS

Alongside the women’s project, HFA has also started working on information resources for young women and teenage girls in the 13-25 age group.

The style and topics covered will be developed with young women and teenage girls with bleeding disorders, and parents and Haemophilia Centres will also be asked for input.

This project is being led by Hannah Opeskin, HFA Health Promotion Officer:

email hopeskin@haemophilia.org.au
phone 1800 807 173 (Mon, Tue, Fri)

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