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European Haemophilia Consortium

European Haemophilia Consortium. A Strategy for Women with Bleeding Disorder The Irish Experience Roundtable of Stakeholders 21st June 2011 – Brussels Debbie Greene Irish Haemophilia Society. National Register. Of the 918 people in Ireland known to have von Willebrands

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European Haemophilia Consortium

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  1. European Haemophilia Consortium A Strategy for Women with Bleeding Disorder The Irish Experience Roundtable of Stakeholders 21st June 2011 – Brussels Debbie Greene Irish Haemophilia Society

  2. National Register

  3. Of the 918 people in Ireland known to have von Willebrands Disease 537 are female. Many do not require therapy on a regular basis but knowing about their bleeding disorder is vital.

  4. Information Outreach Strategies Include lectures on Women and Bleeding Disorders at most Irish Haemophilia Society conferences.

  5. Produced special publication on Women and Bleeding Disorders in 2010. Distribution list: All registered members Women with Bleeding Disorders attending haemophila centres. All maternity hospitals.

  6. Produced special publication on Rare Bleeding Disorders in 2010. Distribution list: All registered members. All with Rare Bleeding Disorders registered at haemophilia centres.

  7. Organised specific conferences on Women and Bleeding Disorders on World Haemophilia Day on 17 April in Dublin & on 16 April in Cork in 2011.

  8. Mailshot to all members of the Irish Haemophilia Society. Advertised in Haemophilia Treatment Centres by production of specific flyers and posters. Mailshot to all obstetricians and e-mailed PDF copy of our publication on Women and Bleeding Disorders. How did we promote the meetings?

  9. Issued press releases which resulted in two newspaper articles in National newspapers.

  10. Publication Women and Bleeding Disorders was sent to all maternity hospitals. Repeat orders received from some hospitals.

  11. Advertised our Information Days at all maternity hospitals. This resulted in midwives and women with known or potential bleeding disorders attending conferences.

  12. All Publications and information materials are downloadable from website. Facebook. Discussion Forum. www.haemophilia.ie

  13. It is vitally important that women with bleeding disorders understand their condition, and the potential impact it may have on them during menstruation, pregnancy, menopause and surgery. Education and knowledge is power.

  14. Irish Haemophilia Society Office Team From left: Debbie Greene, Nina Storey, Anne Duffy, Brian O’Mahony, Nuala McAuley, Fiona Brennan and Declan Noone.

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