In 2022, the EHC Inhibitor Working Group evaluated the achievements of the inhibitor programme, coming to the conclusion that largely the initial objectives have been met and it was time to set new goals and to capitalise on the achievements of the network. So, it was decided to expand the network built for and with people with inhibitors to work on a better inclusion of people with ultra-rare bleeding disorders. This cohort of our community are still dealing with a lack of information about their condition and also a lack of treatment options, leading to the heavy burden of isolation and loneliness in terms of their inclusion in the bleeding disorder community.

To best serve the needs of all this encompassed in the ERIN, a three-fold route will be taken.

Track 1: Providing information, education and training to people with ultra rare bleeding disorders.

Track 2: Ensuring the transfer of knowledge into the local inhibitor communities.

Track 3: Advocacy, and better treatment and care for all.

This April, we focus on raising awareness of Bleeding Disorder of Unknown Cause (BDUC), a condition where people experience significant bleeding symptoms despite normal results in standard laboratory tests.

BDUC is diagnosed when individuals show a clear bleeding tendency, but currently available tests cannot identify a specific underlying bleeding disorder. While research continues, the exact mechanisms behind BDUC are still not fully understood. As a result, diagnosis often requires careful clinical assessment and exclusion of other bleeding disorders.

People living with BDUC may experience frequent nosebleeds, easy bruising, prolonged bleeding after injuries, dental procedures or surgery, and heavy menstrual bleeding in women and girls. Some individuals may also face bleeding after childbirth or medical procedures. Symptoms can vary widely, ranging from mild to more significant bleeding that affects daily life.

Because laboratory results are often normal, people with BDUC may face long diagnostic journeys and uncertainty in accessing appropriate care and management. Increasing awareness among healthcare professionals and the wider community is essential to ensure that bleeding symptoms are recognised, properly assessed, and managed with appropriate treatment and preventive strategies.

Raising awareness of BDUC is an important step toward improving recognition, supporting research, and ensuring better care for people living with unexplained bleeding disorders.

Important note: In Bleeding Disorder of Unknown Cause (BDUC), “unknown” means the underlying cause has not yet been identified. It does not mean the condition is unclear, imagined, or less serious!

If you are interested in learning more about the disorder:

Read more about BDUC on ehc.eu – here

Watch our ERIN Webinar on BDUC – here

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