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New Evidence Highlights the Urgent Need for Gender-Inclusive Bleeding Disorders Research – EHC

EHC/eu-patient.eu

Jun 7, 2026, 05:40

New Evidence Highlights the Urgent Need for Gender-Inclusive Bleeding Disorders Research – EHC

European Haemophilia Consortium (EHC) shared a post on LinkedIn:

”If women are missing from the data, they will keep being missed in care.

Bleeding disorders have long been studied predominantly in men. But women and girls with bleeding disorders face experiences that are entirely their own (menstruation, pregnancy, childbirth, menopause), and these are rarely reflected in clinical research or trial design.

A recent scientific letter from the European Association for Haemophilia and Allied Disorders (EAHAD)’s Women and Girls Working Group published in the Haemophilia Journal makes this clear: most haemophilia clinical trials do not include women.

And even when women are technically allowed to participate, the studies almost always end up with only male participants. On top of that, bleeding symptoms that are specific to women (like heavy periods or bleeding complications during pregnancy) are rarely taken into account when these studies are designed.

This is not just a data gap. It is a care gap. Without research that reflects women’s lived experiences, our clinical understanding remains incomplete, and health inequalities persist.

To align with the EU Gender Equality Strategy, we are calling on EU institutions and stakeholders to ensure that gender-responsive research is systematically integrated, implemented, and monitored across health research programmes. Inclusive research leads to better care for everyone.

This is one of the critical issues that Project Elevate Her is working to bring forward, among others. This month, Maia Meier climbs Mont Blanc as the first expedition of a journey across all seven summits to raise global awareness of the critical importance of timely diagnosis and care for women with bleeding disorders.

As a proud partner, the EHC is sharing stories, expert voices, and perspectives from across Europe.

Follow along as this global initiative unfolds!”

New Evidence Highlights the Urgent Need for Gender-Inclusive Bleeding Disorders Research - EHC