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 increased its focus on women over the years exponentially. Activities on women and bleeding disorders ranged from specific sessions in EHC scientific conferences to 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 this community’s issues. 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 members 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.
The EHC Women and Bleeding Disorders Committee (2020-2022 mandate) is composed of:
Naja Skouw-Rasmussen – Chair
EHC Steering Committee member, Danish NMO
The work of this committee is supported by Laura Savini, EHC Communications and Public Policy Officer.