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 March, we focus on raising awareness of Factor X deficiency, an extremely rare bleeding disorder that affects the body’s ability to form stable blood clots.

Factor X deficiency can be congenital (inherited) or acquired later in life. Factor X plays a central role in the coagulation cascade, helping convert prothrombin into thrombin, an essential step in clot formation. When Factor X levels are low or the factor does not function properly, the blood cannot clot effectively, leading to an increased risk of bleeding.

People living with Factor X deficiency may experience nosebleeds, easy bruising, bleeding from the mouth or gums, prolonged bleeding after injuries or surgery, and heavy menstrual bleeding in women and girls. In more severe cases, internal bleeding, such as bleeding into muscles, joints, the gastrointestinal tract, or the brain, can occur. Symptoms and severity vary widely and are often linked to how low Factor X levels are.

Because Factor X deficiency is so rare, diagnosis may be delayed, and access to specialised care can be challenging. Treatment options include plasma-derived Factor X concentrates or fresh frozen plasma, depending on availability and clinical need. Raising awareness is vital to improve recognition, diagnosis, and access to appropriate treatment.

If you are interested in learning more about the disorder:

Read more about it in our space dedicated to Factor X deficiency – here

Read our report on Lived Experience with Factor X deficiency – here

Download these brochures and share information about this disorder with your community:

• Hereditary FX deficiency
• FX in Women and Girls
• Hereditary FX deficiency – Testing
• Hereditary FX deficiency – Severity

Share the story! Raise awareness! Help the cause!