On 28 and 29 May 2020, the European Haemophilia Consortium (EHC) held two webinars on women and bleeding disorders. The first webinar tackled issues regarding the management of heavy menstrual bleeding in women with bleeding disorders and the second one dealt with access to haemophilia comprehensive care services for women with bleeding disorders. Both webinars are now online and can be viewed on our YouTube channel.

EHC Webinar on the Management of Heavy Menstrual Bleeding

On 28 May 2020, the EHC held a webinar on the management of heavy menstrual bleeding in women with bleeding disorders.

The event was chaired by Ms Naja Skouw-Rasmussen, member of the EHC Steering Committee.

Presentations included:

  • (2:30) What is menstruation and how it is impacted by rare bleeding disorders? Dr Rezan Kadir, Royal Free Hospital, London, UK.
  • (23:20) Case studies on women with bleeding disorders, Dr Thynn Thynn Yee and Dr Rezan Kadir, Royal Free Hospital, London, UK.
  • (54:03) Coping strategies for heavy menstrual bleeding, Ms Malin Svennefalk, Karolinska University Hospital, Stockholm, Sweden.
  • Dr Roseline d’Oiron, Hôpital Bicêtre, Paris, France also contributed to the discussions.

Besides the presentations, the following questions were addressed during the webinar:

  • (39:38) Would treatment for heavy menstrual bleeding in women with bleeding disorders reduce the incidence of developing endometriosis and if so, what is the impact of that?
  • (40:15) What kind of tools can be used to assess bleeding during menstruation?
  • (41:33) How can we extend care for women and bleeding disorders at their home and workplace?
  • (43:28) Are there any studies about the effects of long-term use of hormone treatments?
  • (46:31) What about women going into menopause, is there anything they need to be more conscious about or pay more attention to, in relation to their bleeding disorder?
  • (48:14) Is there a connection between iron levels and bleeding? Should women take iron supplements during pregnancy? And, is there any relationship between iron levels and nose bleeds?
  • (50:30) In terms of factor replacement therapy, how often is it used to control heavy menstrual bleeding? What are the criteria for prescribing factor replacement therapy instead of hormonal therapy to women with bleeding disorders?
  • (1:03:35) How do you approach and educate families about bleeding disorders in girls?
  • (1:05:20) To what extent do you work with the patient organisations? Do you align with them in order to find out how to align with patient groups?
  • (1:06:31) What is your experience with platelet disorders and in-vitro fertilisation? In particular, for people with a record of endometriosis and heavy bleeding?
  • (1:14:23) Should we make a risk-assessment for thrombotic complications when prescribing hormonal treatment of heavy menstrual bleeding?
  • (1:15:45) Could you elaborate on some of the symptoms that should be taken into account in case of ovulation bleed or ovarian cyst rupture to avoid misdiagnosis by a GP or non-specialist healthcare professional?
  • (1:17:55) Do you have any recommendations on how to diagnose patients with mild or moderate bleeding disorders?
  • (1:21:50) Are women with bleeding disorders more at risk of miscarriage or experiencing infertility than the general population?
  • (1:24:55) How do you manage parental consent to talk about intimate issues with young girls with bleeding disorders?

EHC Webinar on the place of women in haemophilia comprehensive care

On 29 May 2020, the EHC held a webinar on the place of women in haemophilia comprehensive care centres. The webinar looked at issues regarding access to diagnosis and treatment for women affected by rare bleeding disorders.

The event was chaired by Ms Diana Lighezan, member of the EHC Women and Bleeding Disorders Committee.

Presentations included:

  • (1:40) What is comprehensive care and why is it important in rare bleeding disorders? Mr Declan Noone, EHC President
  • (14:56) What are some of the issues faced by women to access comprehensive care services? – Discussion between a clinician and patient featuring Ms Naja Skouw-Rasmussen, EHC Steering Committee and Dr Michelle Lavin, Irish Centre for Vascular Biology at the Royal College of Surgeons in Ireland
  • (35:10) The role of the women’s committee within national patient organisations and how to work together with clinicians, Ms Yannick Collé, EHC Women and Bleeding Disorders Committee
  • (45:35) Structural barriers to comprehensive care for women with bleeding disorders: Results from the EAHAD survey, Dr Karin Van Galen, Van Kreveldkliniek, University Medical Centre Utrecht, The Netherlands
  • (55:08) Joint clinics, Ms Debra Pollard, Royal Free Hospital, London, the UK

Besides the presentations, the following questions were addressed during the webinar:

  • (1:14:43) What would be the first steps in creating a haemophilia comprehensive care centre and where does the NMO fit it?
  • (1:18:00) How should the NMO be involved in the collaboration between healthcare professionals and patients?
  • (1:20:07) What emotional support do patients need to manage their disorder? What can the haemophilia treatment centre provide in terms of emotional and psychological support?
  • (1:28:24) Do you have any bleeding assessment checklist and can you share this tool?