The EHC Women and Bleeding Disorders Committee Members

From left to right: Marion Brauer (Austria), Ana Pastor (Portugal), Naja Skouw-Rasmussen (Denmark), Rose Ozdemir (UK), Ulla Hakkarainen (Finland), Evelyn Grimberg (the Netherlands) and Yannick Colle (France). Not pictured in the photo is Tatjana Markovic from Serbia. 

About the EHC Women and Bleeding Disorders Committee

The Women and Bleeding Disorders Committee of the European Haemophilia Consortium (EHC) officially started in 2018. However, this committee came together following several initiatives led by passionate volunteers within the haemophilia community.

In 2015, the EHC ran a first pre-conference workshop ahead of its scientific conference in Belgrade, Serbia on ‘Starting a European conversation for women with bleeding disorders.’ The title of the event was quite prophetic as, thanks to a group of dedicated volunteers from across Europe, the EHC was able to increase its focus on women over the years exponentially. Activities on women and bleeding disorders ranged from specific sessions in EHC scientific conferences to the inclusion in EHC’s youth debates and Leadership Conference. The work of women and bleeding disorders culminated in May 2019 with a first stand-alone international conference on women and bleeding disorders. This was the first conference of its kind.

In 2017, EHC surveyed its members, patient associations, haemophilia treatment centres and women with bleeding disorders on issues faced by this community. The responses were astonishing, with over 700 responses detailing the reality of what it means for a woman to live with a bleeding disorder in Europe. The responses were analysed and published in the scientific journal Haemophilia.

The second significant milestone of 2017 was the creation of a Committee for Women and Bleeding Disorders, which started officially in 2018 and since then, has eight strong women meeting every month to advance their cause: creating awareness, recognition, support and education about, and for women in the bleeding disorder community at European level.

WBD movies and clips

Women and bleeding disorders: Untold stories

WBD - The impact of bruising

WBD - Dental issues

WBD - Fertility

The impact of menstruation

WBD - The importance of peer support

Events

Join us for the second European Conference on Women and Bleeding Disorders

When: 29-31 May 2020

Where: Exact location to be confirmed

For whom: Event open to all

Languages: Event in English with live Russian interpretation

Registration and Programme: Coming soon

EHC Reports: First European Women and Bleeding Disorders Conference

First European Women and Bleeding Disorders Conference Review

Resources

Leaflet: How to start a WBD committee

EHC_WBD-leaflet01-print190509

Download the document here

Contact

If you would like to get in touch with members of the EHC Women and Bleeding Disorders Committee, please contact Laura Savini at the EHC office.