EAHAD is pleased to announce the formation of a Working Group on Women and Bleeding Disorders, following the approval of a proposal to the Executive Committee in September. The Working Group’s mandate will last two years with its official first meeting set to take place during the 2019 EAHAD Congress in Prague.
The aim of the Working Group is threefold:
1) gather, concentrate and disseminate knowledge amongst European healthcare providers on the diagnosis and treatment of women-specific bleeding symptoms in inherited bleeding disorders;
2) define research priorities within the European medical society regarding women with inherited bleeding disorders;
3) diminish misdiagnosis and under treatment of women with bleeding disorders in Europe.
The initiative is a corollary to efforts by the European Haemophilia Consortium’s Women’s Committee to bring to the forefront the unmet needs of women living with bleeding disorders, who currently face issues such as receiving delayed or inappropriate care.
The Working Group is currently comprised of Dr Karin van Galen, (Van Creveldkliniek, UMC, Utrecht), Prof Rezan Kadir, (Royal Free Hospital, London) and Dr Roseline d’Oiron, (Hopital Bicetre, Paris) and is expected to have a maximum of 7 members, including nurse and patient representatives. Their first deliverable will be a survey to identify knowledge gaps, research priorities and unmet needs.